Nora's Blog

Halloween 2011

2011-11-02T08:43:00.000-07:00

We had a fun time this year. Nora wanted to be a witch and go trick or treating. The pumpkin patch was a bit muddy but we made it through. Other than that, things are pretty boring around here. Thanks for checking!

Lori

Fall 2011

2011-09-27T13:02:00.001-07:00

Getting off at school
Waiting for the bus

Holy moly, it's been a long time since I've blogged.

Nora has started kindergarten at a public school, in a self contained program. There are 7 kids (she's the only girl) and 3 teachers. Her teachers are great and are really interactive and supportive. She is doing great although I have only been in twice to observe for myself. I get daily reports sent home and she seems to be loving everything. Nora is still working on "staying with her group" at lunch, walking in the halls, on the playground, etc. But is getting better at listening, I hope. The bus comes at 8:55 and she gets dropped off at 4:25ish. It's a LONG day for the girl.

We don't seem to have time for outside therapies right now. We haven't been to the OT or speech since mid summer. I am not sure how we are going to fit it into our schedule. She does receive services through school but I am not sure how or when yet. I think the SLP comes into the class to work with the kids and the OT may go to PE with them. They are still working out the kinks. Nora also should be going into the general ed K for some social time with her peers but that is still in the works. It is so hard to sit and wait for all of these things to happen. It has been 3 weeks so far.

I did sign Nora up for swim lessons on Sundays. She is not the best student. She just wants to be able to splash around and swim her own way. (vertically) She usually just screams and tries to get away from her instructor. She hopped out of the pool last Sunday, her instructor was in the shallow end, and she RAN to the deep end, looked around at all of us who were screaming "Stop, NO NORA, Stop! etc" and went ahead and jumped right in. The lifeguards and the instructor and I were all there within seconds so I wasn't worried about her drowning. But seriously, she is so naughty. Then, when she gets in trouble she puts herself in time out. She walks calmly to the spot then puts her head down and sobs (usually fake). But she doesn't really get any learning out of the whole T.O. thing.

I am getting used to being home without the kids all day. A whole 6 hours! Ollie has been enjoying his walks.

Well, hopefully I will be better about updating. Probably not. Thanks for checking in!
Lori

N-O-R-A

2011-06-21T07:44:00.000-07:00

Today is Nora last day of pre-school. Last day at the perfect safe little bubble of a school, our school. The EEU. And this morning, she wants to write her name. She was watching Sesame St. and they were writing. And guess what? SHE DID IT! She can write her name. I am so proud of her and all that she has accomplished at school.

She started in the Birth to 3 program.

She was 13 months old. Not crawling, not making eye contact, not babbling, not responding to her name, couldn't hold a cup. And now look at her! LOOK at my baby girl. She is the sweetest, most open hearted, loving girl ever. And she can write her stinkin name.

WOW~

Love that girl

Camping

2011-06-14T08:17:00.001-07:00

Big lollipop, little girl
backyard shenanigans

Summer birthday party
Pool party

Oh lordy. we are going camping this weekend, in a TENT, mind you. No fancy RV for us. This should be challenging. Nora is loving it now, in the back yard. We'll see how she does in the wilderness. I'll have to tie bells on her and tape glow sticks to her so if she gets away we'll be able to find her.

Emma's last day of school was Friday and we had a pool party to celebrate. SO fun. 3rd grade, here we come! Nora still has a week left then a few weeks off until summer camp starts.

Hopefully the weather will warm up here in the NW soon. We have lots of swimming planned so it better!

Thanks for checking in!

Hallelujah

2011-05-15T10:05:00.001-07:00

I don't know the guy behind us so ignore him.

My BFF Lisa is Nora's godmother and her husband Tian is the godfather. Emma is holding Nora's candle.

Is that how you spell Hallelujah? Looks weird.

Anyway, Nora was baptized yesterday. It was quite the production. It was a group deal and Nora was by far the loudest. "Hi Father John, HIIIIII!!!! what's your name? (to everyone), where's my pink phone? etc etc"

I only lost hold of her once but that allowed her to run up onto the alter while EVERYONE else was seated and Fr. John was singing or something. I had to go up and get her. Not an easy task, she's a slippery little devil. And I had on heels which I don't normally wear so I was a bit wobbly running after her. Fun stuff.

But it went well until she got the water on her head which dripped onto her dress which she decided she couldn't wear for one minute longer so she took it off and was running around in her Hello Kitty undies. Nice.

All the other parents were taking pictures with their newly blessed infants, toddlers and such while I was trying to cover her up with my sweater and get her to a least wear the dress as a skirt. nope. no go. I finally got her to put her own shrug/sweater on UNDER the wet dress so she couldn't tell. Phew.

I was sweating bullets by the end of it and had to go home and drink 3 mimosas just to make sure I calmed down a bit. :)

Emma had her baptism and 1st communion on Easter Sunday which was super nice and she was super excited.

My parents came to visit from NY and to be Emma's godparents. I guess it would have been a whole lot easier to have done the whole baptism thing when they were babies but we didn't have a church or anything. Now that Emma goes to Catholic school, she really wanted to have her 1st communion so we went with it.

Onto another subject...
Last week I had to go to IKEA and thought I'd put Nora in the playroom. I don't go often and usually try not to bring her with me but we were on our way home from OT so I decided to try it. I never felt that she was ready to be left there (a-she wasn't totally potty trained and b- she wouldn't have been able to handle it.)

So IKEA has this awesome playroom with soft climby toys and a ball room and crafts and TV. And 3 really old crotchety ladies watching all the kids. One rule they have is only 3 and 4 year olds can go in the ball pit. Hmmm... this may be interesting. I tell them Nora is dev. delayed and has special needs etc. I try to tell her that she gets to play on all the cool climbing toys etc. and get the hell out of there so I can get my stuff before my restaurant pager goes off to come get her. Sure enough, no more that 10 minutes go by and I get paged. Apparently because Nora is 5 she isn't allowed in the ball pit which is EMPTY of 3 & 4 year olds. She's the only one in there. But of course she doesn't give a shit that she's 5 and rules are rules. They kicked her out but she wouldn't listen so they tried to grab her and she flailed her arms and legs. They said she was a danger and threat to the other kids (what other kids?) and couldn't stay.

First of all, she has never, and I mean never hurt another child. She just doesn't do that. She does get a bit feisty if you try to man handle her. Needless to say, I was pissed and can't believe they are so rigid they wouldn't give a kid with special needs any slack. If they let her, they'd have to let everyone etc...

Whatever old lady IKEA workers.

I am sure this won't be the first time she's kicked out of somewhere.

Thanks for checking in
Lori

change

2011-04-06T12:17:00.000-07:00

First time on her bike with training wheels

After (sneaky little girl) eating a bunch of chocolate caramels that I made and left on the counter

I changed the blog background. All the blogs that I read have custom fancy stuff. I have NO idea how to do that. You most likely have to pay for it. I do like orange. I don't really even post so much anymore. I am past the point of really stressing out and obsessing over everything Nora.

She is doing great. Don't get me wrong- She has some major delays -socially, cognitively, communicative and has some behavior issues (she runs away from me or whoever anytime its time to transition-to the car, take a bath, get on the bus, at school, in the store, where ever) it's exhausting trying to reason with her and then I end up just dragging her to where she needs to be. She is heavy. Very heavy. And she won't poop in the damn potty.

She's going into a self contained kindergarten next year-not a typical general ed class which bums me out but hopefully someday she'll get there.

She is such a happy and fun and loving little girl. She always puts a smile on my face. I love her to pieces. I was remembering when I found out she had arachnoid cysts- they sound so awful-I assumed I would have to decide whether to terminate the pregnancy or not. Obviously that wasn't the case-arachnoid cysts aren't that big of a deal, or so they said. But I remember thinking for a split second I didn't want a child with a disability or have a special needs child. I couldn't imagine having to deal with it. I only wanted perfect. Turns out, that is what I got. She is perfect for us.

People used to tell me "thank god Nora got you as a mom, otherwise who knows what could have happened to her" I would get so mad and think that just because I am dealing with it all, do I deserve to have a non perfect child? Why me and not someone else? and I would think, what else is there to do? let her sit in a corner and not do everything I can to help her thrive and grow?

Turns out, we both lucked out. She got us and we got her. She is perfect just the way she is. Except the poop part. That I could live without. I am ready to be diaperless. Really, I am. 7 1/2 years straight. Enough already.

I'll be 40 in 4 days. Yikes.

Emma's new favorite song- Just the way you are

Thanks for checking in

Lori

Random pictures of Nora and Emma

2011-03-23T09:05:00.000-07:00

Sledding at Snoqualmie for K2 Family Fun Day

Pajama Breakfast/concert at Nora's school
Emma looking super little next to the 2 tallest boys in her class
Eating green pancakes for St. Patrick's day
Waiting for the bus

party girl

2011-02-24T18:30:00.000-08:00

Head first down the slide-totally against the rules!
Presents!
Family photo-we all look a little greenish

Nora had a good birthday month. We had a family party, a school party, and a friend party. She LOVED her party at the YMCA with all her school buddies. Emma had fun too!

Alex is traveling a lot lately. Emma is doing great in school. Nora is staying busy with OT, speech, gymnastics and swim lessons on top of school.

I am trying to keep up with everyone! I had Lasik done on my eyes about a month ago and my left eye isn't healing properly. My vision is really blurry so they had to go in and scrape the lens. I think they'll have to do it again b/c it is still blurry. Such a bummer.

Thanks for checking in!

Lori

Birthday girl

2011-02-13T18:36:00.000-08:00

Here is Nora at her birthday celebration at school. She was sick with the flu on her actual birthday :( We'll have her friend party next week at the YMCA so she'll be able to run around and have lots of fun with all her friends.

Still looking at all the special ed programs around our area to see what her options are for Kindergarten. It is so over whelming and nerve wracking to think about change. More for me than her.

I'll post some pics after her party.

Thanks for checking in!
Lori

Almost 5

2011-02-02T08:44:00.000-08:00

Seriously, in 5 days Nora will turn 5. How crazy is that?? She is such a happy girl. She really is. She is on the go from the minute she gets up until she falls asleep. She loves to play with her cars, read books, go to the park, go to school, play with friends, watch Tom and Jerry...

I am so happy that she is here and that we have her for our daughter. I just love her so much I want to squeeeeeeeeeezeee her all the time. She hates that. Sensory issues and all...

I'll post pics soon. I have been very lazy taking pics lately. Alex has been traveling and I've been single parenting.

Thanks for checking in
Lori

Infantile Spasms

2011-01-13T14:35:00.000-08:00

I just watched this that I found from another blog that I read. It saddens me so much that children have to go through such radical surgery to get rid of their seizures. There are a few friends that I have met via blogs that have had this done. What a scary thing to have to watch your child go through. I am so thankful that medication worked for Nora. But I don't know how much damage her seizures did to her brain before she was finally diagnosed with Infantile Spasms. She went at least 4 months undiagnosed and untreated. That is a long time to mess with a developing brain.

I know she has come so far since then but she still has such a long way to go to catch up. If she can.

She is doing great so I should be so thankful and grateful for what we have and how far she has progressed but some days, it is hard not to think into the future.

Happy New Year!

2010-12-31T09:53:00.000-08:00

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

Yo Gabs

2010-11-17T08:28:00.001-08:00

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

Halloween

2010-11-02T08:52:00.001-07:00

Cowgirl and Ron Burgandy

Fun times had by all. Hope your Halloween was bountiful! Thank goodness Emma's school collects "extra" candy to donate to the troops! We had a lot! And we had no rain for trick or treatin!

Thanks for checking in
Lori

Random pictures

2010-10-23T08:07:00.001-07:00

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

Madsen bikes

2010-10-15T09:02:00.000-07:00

I think I need one of these!

How awesome would it be to be able to ride a bike w/Nora in the bucket? She probably would jump out every 5 minutes but it would look cool! Ollie might like it too. He's getting old.

I'm off to Austin for the weekend!

See you later

Lori

Yay for school!

2010-09-29T12:09:00.001-07:00

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

still waiting

2010-09-12T17:04:00.000-07:00

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

Trip to NY

2010-08-27T20:49:00.000-07:00

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

Fun in the sun

2010-07-26T11:26:00.000-07:00

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

Snaggletooth-revised

2010-07-15T19:29:00.000-07:00

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

Summer

2010-07-08T09:43:00.000-07:00

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

Clothing optional

2010-06-24T08:05:00.000-07:00

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).

Bison and potty

2010-06-11T08:37:00.000-07:00

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

Yo What?

2010-05-28T17:31:00.000-07:00

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

Finally!

2010-05-25T08:07:00.001-07:00

Freakin finally-she will drink out of an open cup. This has been a goal on her IEP since she was 2. Good lord she's stubborn. Now if only she'd pee in the potty at home...

Come and gone

2010-05-10T11:49:00.001-07:00

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

Fun

2010-04-26T14:17:00.001-07:00

Great story about our good friend, Frannie. She and Nora go to the same school, the EEU. The EEU auction is coming up soon. Can't wait! The last 2 years were a blast.

We just attended the auction at Emma's school on Sat. which was also lots of fun. Sunday morning was not so fun :) A good time was had by all.

We have been doing our thing here. Not much to post. Nora is still obsessed with her iTouch and Yo Gabba Gabba.

We are working on potty training. Still no pee in the pot but she sits on it for a while. It's a start. Hopefully the m&m's will be an incentive to go.

Thanks for checking in!

Lori

Spring Break

2010-04-11T07:43:00.000-07:00

It's been a busy few weeks. We went to upstate NY for Easter and Spring Break. I took the girls solo. Emma and Nora loved seeing the Pawlows Family. They played with their cousins Katie and Brynna as much as we could. Mim and Grandfather were tuckered out by the time we left. The travel wasn't as hard as some would think. The girls are really good on the plane. It's the layovers that get me. Nora is a runner and I have to be on her every second. As long as we had the iTouch and Yo Gabba Gabba episodes, we were fine.

When we got back we had a birthday dinner with the Draper grandparents for my birthday. Grandma found Brobee, Plex and Foofa online and Nora was so happy! She goes back to school on Mon after 2 weeks off. She is really talking so much. It's really unbelievable sometimes. She likes to ask people what their names are, what their favorite color is, and she asks everyone to tell her a story. Funny girl.

Thanks for checking in!

Happy Spring

Lori

Not much to report

2010-03-26T18:37:00.000-07:00

Ollie never gets any air time so I thought I'd let him have center stage.

I seriously think I need to make these tomorrow. Seriously, have you ever heard of anything so amazing?

We (the girls and I) will be headed to NY for Easter and spring break next week.

We've all just been doing our thing.

Emma has been busy with school and activities. Nora has not been napping every day so it gives us more time to do things before we have to pick up Emma. Like run errands or go to a park. It's nice to have more freedom to get things done and not stress about bringing Nora with me to the store. She'll usually sit in a cart for a least 1/2 hour before I need to break out the i phone. Things get easier as she gets older.

We are trying to plan a trip with my brother and his family and my parents for Christmas. Somewhere warm and sunny with white beaches and turquoise water. Maybe to Turks and Caicos Islands. Anyone have a house that sleeps 11 for rent over Christmas?

I'll let you know how the french toast waffles turn out. Seriously!

Tooth!

2010-03-04T18:19:00.001-08:00

Nora lost a tooth yesterday. I have no idea when, how or where. She went to school with all her teeth and came home without one. There was nothing that her teacher could think of that would cause her tooth to fall out. I hadn't noticed any loose teeth but she isn't so willing to let me look around in there for too long. It was a bottom tooth, not in the middle but one next to the middle. So not even a common first tooth to lose. So strange. She JUST turned four. Seems a bit early.

When we went to the dentist a few weeks ago, the one where they strapped her hands to her sides and velcroed her body in a big wrap to restrain her, there was no discussion of loose teeth. But then again, there wasn't much time to do much searching in there. Sooooo.... not sure what the heck happened. And I can't get a picture of it but I'll keep trying.

The tooth fairy didn't come since we don't have the tooth and Nora doesn't even know she lost one. Emma was wondering. Maybe for the next tooth.

Thanks for checking in
Lori

Only 2 more days until Alex gets home...phew.

Yo Gabba Gabba Mania

2010-03-01T16:07:00.000-08:00

Nora is doing great. School is fun for her and she loves the bus. She is rocking her i Touch all day if we let her. But she is also into Yo Gabba Gabba! right now. She asks to watch it all the time so I got her a book, the cd and action figure of Brobie. She loves it. I have been looking for a stuffed animal or t shirt but apparently this stuff is hot right now and I can't find it anywhere.

Emma has been skiing and dancing and doing gymnastics so we have been busy as bees. She also had to do a report on a president, she got Abe Lincoln. It turned out very cute and she did a great job in her presentation.

Alex is in Japan for the week so hopefully I'll survive! Thanks for checking in!

Lori

MMR

2010-02-10T14:48:00.000-08:00

I took the leap and let Nora get the MMR shot yesterday at her 4 yr. old well visit. She seems to be handling it just fine. I don't really have any fears anymore. I think because she is quite healthy and has been seizure free for so long. And her development is progressing non stop. She is still off on vaccines but I am not too worried about the others. So hopefully we won't see any bad side effects. Knock on wood.

She is 94th% for weight and 57th% for height. Ooff. Big girl.

Dr. K said I should start giving her 1% milk instead of 2%. And go down to skim eventually. That seems so wrong. I grew up on whole milk. I now use 2% in my cereal and I don't usually drink milk. I do have skim in a latte though. Emma is tiny so she drinks 2%.

Alex gets home tonight. It's been a long 2 weeks. Between girl scouts, dance class, ski lesson, speech therapy, doctor appts., gymnastics, play dates, volunteering, birthday celebration at school, and all the regular house stuff, I am wiped out. I need a nap.

Nora's party is on Sat. and Emma and I go see Annie the play on Sun. and Alex and I get a night out Sun. Whoohoo.

Thanks for checking in

Lori

Happy Berthday

2010-02-06T08:31:00.000-08:00

Emma made Alex and Nora a sign "Happy Berthday". What a nice big sister.

Tomorrow Nora is officially a big kid. 4! That's so old. I can't believe she is 4. She is absolutely awesome. She is such a happy, spirited, loving little person. Her teacher wrote me an email when Nora was out sick the other day. "Our class is certainly not the same without Nora- our very own ray of sunshine..." She is just like a ray of sunshine.

Mim and Grandfather bought her a Skuut for her birthday. She hasn't gotten the hang of it yet. She wants to put her feet up like on her trike. Hopefully she'll learn to balance and push with her feet at the same time. Emma is good at it!

We are having her party next weekend at The Little Gym. I don't think we'd get too many folks tomorrow since it's the Super Bowl. And Alex is in Germany. And Emma has ski lessons.

Keep checking in to see what Nora has in store for us this year! (hopefully using the potty)

Happy Birthday my amazing girl!

Lori

Dentist

2010-01-26T08:22:00.000-08:00

I am taking Nora to the dentist tomorrow. A new dentist. We have a fabulous children's dentist but Nora won't let her into her mouth to see what's going on. She freaks. Like REALLY freaks. And Nora's teeth have been ground down by her bruxism. (teeth grinding) So I am really curious to see if the dentist at Children's Hospital will have to sedate her or something to get an exam. Should be fun. And she has a cough and slight fever today. Ug. Hopefully we wont' have to reschedule.

Only 2 more weeks until her 4th birthday. Big girl. I think at her 4 year well check up I am going to have her get her MMR vaccine finally. ( I did get her the H1N1 and seasonal flu shots and boosters this year.) I think she's ready. I think I'm ready. I still have concerns about getting her final booster of the DTaP. There is that huge WHAT IF? She can't go back to having seizures. That's not an option.

Alex will be traveling for the next few weeks. Denver, Munich, Japan...Wichita! fun stuff. He'll be out of town for his and Nora's birthdays. But he'll be back for her party. I am sure I will be going bonkers by the end of his trips.

Thanks for checking in
Lori

IEP-Individualized Education Program

2010-01-13T19:59:00.000-08:00

Today I had Nora's IEP meeting. It went quite well. I got encouraging news from all therapists and teachers. She surpassed all of her communication goals from last year so now onto more advanced skills-same with fine/gross motor, social, adaptive and cognitive goals. She still qualifies in all areas but she has made great progress in them all as well.

Nora's school, the EEU, is such a great place for her and our family. I feel so at home there and the staff are all amazing. They love and care for Nora-she's been there for 3 years. Her current preschool teacher worked with her one on one when Nora was 2 so the difference we see since then is phenomenal. And she still has another year and a half to go. AND she could go there for K as well if the stars align.

It is so crazy that only 2 years ago, I would have bet you that Nora would never talk, or at least be able to converse about something meaningful. I really didn't think she'd make much progress. I hoped but I don't think I really believed it. I am so amazed at her progress.

She is sounding out/reading words. If I write C-A-T she'll sound out the individual sounds then blend them to form the word. She can count to 20 and count objects up to at least 10. She has over 500 words probably, can sing any song she's ever heard and in key, loves to imitate animal sounds, knows all her classmates' names, can tell you all of her extended family names, works her i-Touch like nobody's business, loves to meet new people and is pretty much happy all day long. Crazy.

We still don't know why she is delayed. She doesn't fit on the autism spectrum. She has numerous neurological abnormalities. Partial agenesis of the corpus callosum, arachnoid cysts, heterotopia, and she had a catastrophic seizure disorder, infantile spasms or West Syndrome. Combine all of these and you get severe cognitive delays, seizures, ADHD, behavior issues, eating issues, developmental delays, abnormal social behaviors, mild to severe mental retardation, and the list goes on. So no wonder she's got a few issues. But she is so darn cute you got to just squeeze her till she squirms.

Our little wonder girl. I can't believe she's going to be 4! In less than a month. Holy moly.

Thanks for checking in.
Lori

Happy New Year

2009-12-31T07:43:00.000-08:00

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

Singing and etc.

2009-12-07T08:34:00.000-08:00

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

Giving Thanks

2009-11-26T10:34:00.000-08:00

I am thankful for these two little turkeys.

Happy Thanksgiving

Love Lori, Alex, Emma and Nora

Still here

2009-11-18T08:53:00.000-08:00

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

Me and me

2009-11-09T18:51:00.000-08:00

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

Rain Rain Go Away

2009-11-07T08:49:00.000-08:00

Nora's school photo. We did retakes on Wed. They weren't much better.

It has been pouring for days. Not much to say so I posted some pictures.

Thanks for checking in
Lori

Halloween

2009-10-29T12:43:00.000-07:00

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

Pumpkin Patch

2009-10-23T09:59:00.000-07:00

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

no more naps

2009-10-15T13:01:00.000-07:00

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!

Busy busy busy

2009-10-09T15:39:00.000-07:00

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

school and other random stuff

2009-09-26T08:32:00.000-07:00

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

Preschool take me away

2009-09-17T09:38:00.001-07:00

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

Big First Grader

2009-09-02T11:52:00.001-07:00

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

Friends

2009-08-27T09:16:00.000-07:00

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!

like a fish

2009-08-25T09:08:00.001-07:00

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

Birthday girl

2009-08-17T14:39:00.000-07:00

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

All done with meds

2009-08-09T10:16:00.000-07:00

Norsie

Cousin Katie and Emma at the Saratoga children's museum

Emma and Brynna

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

New York

2009-07-29T07:21:00.000-07:00

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

summer fun

2009-07-02T08:06:00.000-07:00

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

Last days

2009-06-21T20:56:00.000-07:00

Nora and teacher Valerie
Emma and some kids from her class.
Emma and Ms. Coghill (Emma was bawling at the end of the day, so sad to leave)

Friday was Emma's last day of Kindergarten. Big girl. And Nora finished her first year of preschool. Summer officially starts tomorrow. Bring on the margaritas!

teef

2009-06-21T20:33:00.000-07:00

Nora grinds her teeth. She has always done it. It used to be worse. It would just make my skin crawl. She is actually on my lap as I type watching you tube videos. And grinding. Just barely but still grinding. She doesn't realize she's doing it I don't think. I tell her to stop "Nora no teeth grinding!" and she'll say "No teef!!!" and stop for 2 seconds. Emma has lost her 4 bottom teeth already and will be 6 in Aug. I hope Nora loses her little stubby teeth sooner than later. They look so tiny. She got teeth early. Her bottom 2 by 4 months old. So maybe she'll take better care of her big teef.

Happy Father's Day to all those dads out there.... Alex, Frank, Joel, Mark, Zeth, Marc, Brandon, Matt, Christian, Kenneth , Bill and all the special dads that I know and only read about. There are a lot out there.

Thanks for checking in
Lori

PS I got my i phone Finally and can't stop playing with all my fun apps. Emma and Nora especially like the whoopie cushion....

Lucky stars

2009-06-06T11:47:00.000-07:00

I have to thank our lucky stars that Nora hasn't had a seizure in 2 years, since the 7th injection of ACTH. She has only been on one seizure med at a time-Zonegran and then Lamictal and they both worked. She is now down to 50 mg/day and we will keep decreasing over the next few weeks.

I read a lot of blogs about other children with Infantile Spasms. A lot of blogs. I don't know how to put them on the sidebar of my blog or else you could see them all. Maybe I'll try to figure that out today. ANYWAY, the IS blog community is very supportive. I sometimes don't feel like we fit in now- because Nora is one of the lucky ones who doesn't have seizures anymore. (knock knock knock on wood) But I cry with every parent out there who has to see their child have a seizure, have to go through test after test and with those who have surgery on their wee little brains to cut out the bad parts.

Like Sophie. I have been reading about Sophie since day 1 of our IS journey. She and Nora seemed so alike-close in age, close in developmental abilities, close in cuteness. Her mom Elaine has emailed me and I her about various things. She even emailed me the other week while in the hospital with Sophie. To comment on our Maui trip. Amazing mommy. They have been in the hospital for a couple of weeks now. I can't even begin to imagine how they are handling this. What a scary thing to watch. Please keep Sophie and her family in your thoughts.

I have to thank our lucky stars EVERY day. Nora is doing so well. She amazes us every day with something new. If I could figure out how to download video, you could see. Maybe later.

Thanks for checking in
Lori

Wowie Maui

2009-05-28T08:00:00.000-07:00

Hi- we're back from our trip to Maui. The girls had so much fun. The beach, the pool, the aquarium, the pool, the luau, the pool, the ice cream, the yummy sushi, the parrots on heads, the pool. Did I mention the pool? Emma (and Nora too) did a lot of swimming. She is getting pretty good for a girl who can't touch in the shallow end. Alex and I were exhausted every night but tired and happy. The weather was awesome and who doesn't love the pool?

The EEU auction is this weekend so we are doing some volunteering to get set up for it. It is a huge event. Last year they made almost $600,000 and the year before that $720. K2 is a sponsor again this year. It should be a blast. And hopefully we'll get some fun stuff.

We started weaning Nora from her seizure medication (Lamictal). She was on 70mg/day and we've been decreasing 5 mg a week and is now on 55 mg/day. She seems to be tolerating it ok. Knock on wood. She is chatty kathy. Can't get her to stop! She just talks your ear off. She is super social too. She loves to greet anyone she comes in contact with. So hopefully her wonderful progress will continue.

Thanks for checking in! Aloha!
Lori

Happy Mother's Day

2009-05-10T19:32:00.001-07:00

Happy Mother's Day to all the moms out there. And especially to my mom! Big hugs and kisses.

We had a great day. We played at the park and on the beach. The girls got soaked and smelled fishy. The tide was way out. We had a bath first then a nice dinner for Judy (Alex's mom) and me. I made a fabulous strawberry cream cake. Yum. It was a lovely day.

Tomorrow we go to see Nora's neurologist. It is Nora's 2 year anniversary of being seizure free. She stopped having seizures after 7 days of ACTH. I can't believe how lucky we've been. Knock on wood. I can't believe that it has only been 2 years. It seems like a lifetime ago. What a horrible time that was. It is amazing how far Nora has come since then. We didn't think she'd be able to ever talk or even walk. We had no idea what she would be like. Now look at her. She's doing great, absolutely great. I am amazed at what she can do every single day. She does something spectacular every day. Literally. I am so grateful that she has come this far. I feel like she may have a chance at really beating the infantile spasm odds. I hope I am not jinxing it. I think she's an amazing little person.

Nora was on Zonegran for about 18 months (?) and has been on Lamictal for about 6 months, maybe more. I have to go back and check. I think they'll start weaning her off the Lamictal soon. I have mixed feelings of taking her off meds. I can't believe the progress she's made since being off Zonegran. It was soon after she was done with it that she really started talking.

So would she make even more gains off all meds???? Would she have a chance of having seizures again? We don't know what even caused her IS in the first place. Do her delays have to do with the seizures or from the agenesis of her corpus callosum? Or could her seizures have been caused by her arachnoid cysts? No one knows. Will she stay seizure free forever if she stays on her meds or could she stay s-free off meds too?

There are so many risks and factors to consider. I know of so many kids who haven't been as lucky as Nora who are still fighting seizures, lots of them, every day. And they haven't found a medication to make them go away. I am so so thankful that Nora does not have to be plagued by daily seizures anymore. Do we chance it and take her off her meds? I guess I'll worry about it tomorrow.

Today was a perfect day with my girls, my dog and my husband. We'll worry about tomorrow in the mo-ning. As Nora got into her bed, (yes bed, not crib!!!) she said "Mommy, night night, I lub you, see you in the mo-ning."

And 10 days until Maui. Ahhhhhhh............

Thanks for checking in.

Lori

May is here

2009-05-01T09:43:00.000-07:00

Only 20 days until we go to Maui. SO excited. A very non exciting week around here. Alex got home Sun. and all is back to normal. Emma has running club today. She's getting ready for the Alki-a-thon in a few weeks. The kids get pledges to run laps to raise money for her school. We'll see how many laps she'll run. She's more of a slow poke than a sprinter. I can't believe she's almost done with Kindergarten.

Nora's school's auction is at the end of the month. It is an enormous event. Last year they raised over $600,000 and has made $750,000 in past years. It won't be as big this year due to downsizing the items and the economy. But it is a fun event and this year's theme is Mission Possible-spy stuff. What to wear?

I am worried about what to do with Nora this summer. Her school has a camp in July but we'll be travelling a lot that month (Seaside, OR and NY for my 20 yr reunion). But then in Aug? nada. She's too young and not potty trained for most camps and I wouldn't trust her to be in a typical camp setting. She's a handful to take to the beach/pool/park. Think 18 month old in a 3 year old's body. I have to be on top of her so she doesn't run away or get hurt. Emma has 1 camp scheduled in Aug. and hopefully some swim lessons. We'll have to get creative.

Thanks for checking in

Lori

long week

2009-04-25T11:37:00.000-07:00

It's been a loooonnnnggg week. Alex is in China, he left Sat. am and gets back tomorrow am.

Nora and Emma both had dentist appointments. I don't know how we are ever going to get Nora to allow someone clean her teeth or fill a cavity. She freaked out when the dentist just looked at her teeth. They'll have to knock her out. She also had her hair cut last week-I had to hold her arms down and luckily the person doing it was fast so it wasn't too bad. She screamed bloody murder the whole 15 minutes. Fun times I tell ya.

I'm counting down the minutes until we go to Maui at the end of May. I can't wait. It will be our 1st family vacation. We've visited my family in NY lots and we've gone to the OR coast with another family but this is just the 4 of us.

That's all for now. I have a stinky diaper to change. (OH Nora peed in the potty at school 2 times so far!)

Thanks for checking in
Lori

Sisters

2009-04-06T12:28:00.000-07:00

Sisters

First 2 wheel bike ride

Emma lost her 4th tooth!

We had a lot of together time this past week. Both girls had the week off for spring break. The weather was typical Seattle spring-rainy and cold. Until Sunday. Of course. It was a lot of time in the house trying to find things for the girls to do.

Emma doesn't really play all that much with Nora. She'll give it whirl for a minute or two but then moves on. When I got pregnant with Nora I was so excited that Emma would have a sibling to play with and they'd be best friends. 2 1/2 years apart was perfect. But Nora is still like a baby in most ways and Emma still has to play alone most of the time. Hopefully they'll grow closer as Nora develops and gets older. I am sure even if she was a typical child, they would still have their moments.

Emma lost her 4th tooth (all bottom) this weekend AND learned to ride with no training wheels. Very big girl stuff. She pulled it out (with my prodding) because is was just hanging there. Then she putzed around for about 20 minutes on her bike and then just took off with out ever falling, not once. I was so impressed. And sore. I was running next to her and now my muscles are sore. Very sad indeed. I am 38 after all (or will be in 5 days).

I have been swimming every week to try to get in shape. I guess I need to work on the running thing. I hate running. But we are going to Maui in May so I better get going. And my 20 yr high school reunion is this summer. I have lots of work ahead of me if I want to look like I did when I was 18-ha.

Nora went back to school on the bus today. She missed her friends. She loves to talk about them and name them all. She is really taking off with her vocab. She repeats most everything. And has lots of funny saying. Whenever she hands me something she'll say "Here ya go". Or if she does something like a puzzle piece or use her fork, she'll say "yay!". And if she talks about herself, she'll use Nora. Nora sit, Nora run etc. Very cute. She has started to have lots of separation anxiety when I bring her to the daycare at the Y. She hates it when I go. I hope this is temporary and just a developmental milestone that she is hitting late. She recovers quickly though.

Thanks for checking in
Lori

Random

2009-03-29T08:34:00.000-07:00

Here are some random photos of the girls. We went to the Seattle Aquarium a few weekends ago. Nora did pretty well. It's not as stressful taking her to crowded places anymore. She actually looked at some of the displays.

We are also taking a music class on Wednesdays-Kindermusik. She is starting to join in on the group activities and follow along with hand motions etc. The first few classes she just ran around the room saying Hi to everyone. Now she'll sit and follow along for most of the class.

She talks non stop, all day long. She'll talk over you if you are talking so you'll pay attention to her. She's very loud. And does not like to be ignored. If I am on the computer she'll just yell -"Sit, up, sit, mommy, sit, sit sit, sit......" until I go nuts and let her sit with me. Then she'll mess with the keyboard while I'm typing. Little stinker. And she loves the computer. Her teacher sent us a link to see pictures of her class and video clips. She'll ask to watch it over and over and over. She'll sit here and name every kid in the class while their pictures are on the slideshow.

Nothing else exciting going on here. The girls have next week off for spring break and we are staying home. There is no music, ballet or speech all week. It is going to be a loooooonngggg week. We like our schedules. Or at least I do.

Thanks for checking in
Lori

Saddened

2009-03-24T07:32:00.001-07:00

I just read one of the blogs that I check almost every day, about a 4 year old little girl with many struggles, including infantile spasms, named Jordan. She passed away yesterday. It was unexpected and in her sleep.

This family is amazing. The Rowes live in Vancouver WA which is about 2 hours from here. I have read their blog for more than a year and unfortunately the old blog had been lost and they just started a new one. I am just so saddened by this news and can't even imagine the sorrow they are experiencing.

My thoughts and prayers are with them.

http://devonandleslierowe.blogspot.com/

Explosion

2009-03-15T18:22:00.000-07:00

Ollie our dog

There has been an explosion of learning and language over the past few weeks. Nora is a non stop chatter box. She points to everything and labels it. House, shirt, car, bird, shoe, Ollie, monkey, cat, Mommy, anything she doesn't know she wants to know the word for it. She is counting up to 20 and is pretty good at colors. She yells for me from everywhere in the house- Mommy! Mommy? Mommy! Hello Mommy. Hello.

She loves her "fends" at school. They have placemats with everyone's pictures on it and she points to all the pictures then to the friend and says their names. Her favorite is Dorian. A very cute little guy in her class. But she knows everyone even if she can't say their name.

Nora and I have a game where I'll ask her to "Say.... and then a word." She now goes around and says to me "Mommy, say..... Dorian, waits for me to say it and then say.....Victor", and so on. (and on and on)

We were singing the hokey pokey today and at the very end she yelled "Pokey". I didn't even think she knew the game. She used to play it but I have never seen her participate. And then she wanted to tell us what to sing, foot, head, elbow. That is a huge concept. She does the same thing with Old MacDonald. We wait for her to insert the animal (usually either cow or cat) and then we finish the song.

Emma is feeling under the weather. There is a bug going around her school and she has a 103.5 temp today so will probably have a stay home day tomorrow. She has napped all day which probably means up all night. Fun fun. Hopefully it won't turn into a puke fest.

My mom (hi Bev!) starts chemo soon so please send some good thoughts her way. And if you are a praying kind of person, maybe a prayer or two. She is very positive and upbeat so I hope she breezes through her treatments without any sickness. We love you!!

Thanks for checking in
Lori

The Short Bus

2009-03-11T12:31:00.000-07:00

Waiting for the bus-not so happy.

On the bus-seems OK.

Big girl on the bus to school.

I remember in junior high when people would make fun of the not so popular kids by saying they ride the "short bus". People still use the term as adults I am sure. Basically if you ride the short bus, there is something mentally wrong with you. Almost as bad as being called retarded.

My kid rides the short bus. There you go.

She is now officially taking the bus to school. On Monday, I rode with her. The bus driver, Brian, was trying out the route and picked her up 1st and we were on for an HOUR. Not so good. Today he picked her up last so she should only be on for about 20 minutes. And she'll only take it M/W/F for now. And only to school. Maybe someday she'll take it home.

Nora loves buses. And she was fine getting on the bus but I don't think she likes the seat belt, even though it is a 5 pt. harness like her car seat. Hopefully, she'll learn to love the bus because it will really make my life a tad bit easier and not so much like a chauffeur. I will still pick her up everyday.

She is doing great. Her speech improvements are enormous. She can say almost anything and wants to know what everything is. She is still only putting 2 words together spontaneously. But she is able to tell us what she wants. So awesome. It gives us so much hope that she'll be able to talk sooner than later.

She is fitting right in at preschool. She can say all of her friends names (kinda). I think she likes it. She still has to take breaks and she doesn't always participate appropriately (yesterday they played musical chairs and she had no clue what she was supposed to do) but she had fun.

Alex is in CO until Friday so I'm flying solo once again. I got away for a night with some moms from the EEU on Sat. We went to San Juan island for an overnight. It was so nice to get away. And to be with moms who have kids with special needs is nice too. We all know what we are feeling even though some kids have more severe delays and some minor, it is still helpful to be able to talk about it.

Emma is doing great. She is keeping me busy too. Ballet, swim lessons and play dates. She's a good girl.

Thanks for checking in

Lori

fancy new camera

2009-03-04T11:45:00.000-08:00

Alex got me a new camera for my birthday (a bit early). It is a canon rebel. I have no idea how to use it yet but the auto button seems to take really nice shots. Better than my point and shoot. Hopefully I will dazzle you and amaze you all with my beautiful photography soon.

Nora is good. We had music class today and she did great. I need to get her in the car and off to preschool.

Thanks for checking in

Lori

cheesey

2009-02-27T07:54:00.000-08:00

My girls have the cheesiest cheeses ever. Nora looooves to say CHEEEEEEESSSSEEEEEE while taking pictures. Very funny but hard to catch.

So one week of preschool down. Nora is doing great. She is such a trooper. She goes in and acts like she's been in the class all year. There are a lot more transitions now than in ITP. She also has to sit for longer periods of time-up to 15 minutes of circle time. But so far so good.

There was no school yesterday actually because we had a dusting of snow. I can't get over how many snow days we've had this year.

Emma started up swim lessons again yesterday. Alex is home for a week and then has to go to CO for a few days. But it has been so nice to have 2 parents in the house for a bit. Single moms, (and dads) give yourself a huge pat on the back.

Thanks for checking in.

Lori

Homeward bound

2009-02-20T14:56:00.001-08:00

We have been in Albany NY since Feb. 11th and will be heading home tomorrow. Emma and Nora have had a blast with Mim and Grandfather (who are both on the mend). Not to mention the cousins and aunt and uncle. And all of our friends who we got to spend time with. But we haven't seen Alex since Feb. 7 so we are ready to go home.

Nora starts preschool in her new classroom at the EEU on Monday. I am so happy that she (we) get to stay in our school. It is so important to us. Nora has been talking up a storm while in NY. SO many new words I can't even count. Very exciting.

We went to go see Elmo Live and Nora sat in her chair or on my lap for the whole hour and half!!!! Huge. She loved it and was clapping and watching the whole time. So awesome. She doesn't even watch TV for more than 2 minutes.

Now we have a 6 hour plane ride back to Seattle so I hope she sits nice for that!

Thanks for checking in!

Lori

Happy Birthday!

2009-02-07T09:40:00.001-08:00

Today Nora is 3!!! Happy Birthday!

Last day of toddler class

2009-02-05T16:18:00.000-08:00

toddlers doing yoga

Walking down the hall

OT/PT Christy

Emma and Nora

Birthday crown

Today was the last day of Nora's toddler class. She wasn't too keen on the crown or the birthday song.

But great news-- she got into a preschool at the EEU so we don't have to move to a different school!!! I am so relieved. It means so much to us to have the support of the parents and staff there. I couldn't be happier!!

Lori

Birthday girl and dad

2009-02-01T14:01:00.000-08:00

Today is Alex's birthday. Happy Birthday! We celebrated Nora's party today because Alex will be out of town this week and next week. But then he'll be done for a while.

We had 15 of Nora's friends at Gymboree for some fun. It was great. There were kids with special needs and typical kids. Lots of friends from school and our family friends. Everyone had a great time. Nora was not into the organized activities such as the musical instruments and circle time. She just liked to run around and explore. Emma loved it too. It is so nice to not have to worry about Nora's safety at a party. Usually we are running after her to make sure she stays in the space or doesn't climb on something too big etc. Today was very enjoyable for the kids and parents.

I had Nora's IEP meeting last week. We are slotted to go to another preschool in our neighborhood but we're still hoping they'll let us stay where we are. I just can't imagine not being at the EEU. It is such a wonderful place for the children and the families. Alex and I went yesterday to help tear down the old playground. I actually stuffed envelopes for the auction. They are getting new play equipment.

So if we do have to leave, Thursday will be our last day. Sad sad sad.

Nora turns 3 on the 7th. Unbelievable. It's been a LOOONNNGGG two years from when we realized there was something not quite right. She's come a long way. Hooray for Norsie.

Thanks for checking in!

Lori

new words

2009-01-26T16:15:00.000-08:00

Nora can now say Daddy and puppy. She seems to be picking up new words everyday. We are also starting to use PECS, pictures, to help her communicate. She gets so frustrated and just yells when she can't get what she wants. So maybe this will help with the yelling.

She only has 2 more weeks of her birth to three program. It will be so sad to say good bye to all of her teachers. But hopefully we'll see them in the halls if she gets into a preschool there.

Alex was home this weekend but took off again today for Vegas until Thurs. Maybe he'll get lucky at the poker table.

We will be headed to Albany, NY soon to visit with our peeps on the east coast. Can't wait to see everyone!

Thanks for checking in.

Lori

Pictures

2009-01-17T10:44:00.001-08:00

Emma made some sort of bug... or is it the bird?

Nora's new trike

Nora and Alex

Mom-mee

2009-01-17T10:23:00.000-08:00

Nora started saying Mommy, not just mama. Very cute. She is singing it right now to the tune of Baa baa blacksheep. Mommy mommy mommy mom... She can almost say Daddy. It sounds a bit like Gaggy. She has about 15 words that she can say and lots of other sounds or approximations for words. We are very hopeful that she will someday be able to put sentences together.

Alex is in Austria for a work trip until Tuesday. Then off to Vegas on the 26th. Then back for a few days then off to VT. Then home for one day and gone to Japan on the 7th (Nora's bday) until the 13th. SO I am flying solo for a while. I am taking the girls to Albany on the 11th until the 21st so if you are an upstate reader, maybe I'll see you!

Nora's birthday party is going to be on the 1st, which is also Alex's birthday. I invited some of her school friends and some of our playgroup pals. It is at the same place as last year and they have lots of fun things to climb, jump, slide and bounce on.

Still no word on whether or not we'll get to stay at the EEU. As of now, it looks like she'll be going to W. Seattle Elem. which is pretty close to our house. Emma's school, Alki, also has a preschool but they are full. I guess we'll have to try to get into the EEU or Alki in the fall. I am sad to leave all of our good friends. Nora has been there for 2 years. We really got lucky getting into the program when we did. Nora has made such amazing progress and loves to be there.

The results of her test came back negative to the kidney/bladder reflux that they were concerned about. But the urine test came back positive and she still has a urinary tract infection. This one is a different type than the 1st one she had. Another 10 days of antibiotics. Fun stuff. AND another catheter at the end to make sure it is gone. Grrrrr.

Thanks for checking in!
Hopefully I'll make it through the next 4 weeks without a nervous breakdown.

Lori

VCUG

2009-01-08T16:21:00.000-08:00

Nora goes in for a VCUG (voiding cysto urethrogram) tomorrow. Due to her bladder infection with such a high fever, they have to check for bladder/kidney issues. Fun stuff. They put in a catheter and some dye is put in and they do an xray. Then she has to pee through the cath so they can see. And she has to stay still for the whole time. Needless to say she'll be sedated a bit. Fun fun fun I tell you. SO wish us luck.

Thanks for checking in
Lori

The word

2009-01-06T18:28:00.000-08:00

Still no word on Nora's placement for preschool. I am trying to organize a trip to Albany in Feb. for the school break but it is hard when I don't know what the deal is with Nora's IEP and new school. Hopefully we'll get to stay at her current school but I have a feeling it won't be the case. And the preschool at Emma's school is also full.

She is a giggly girl at the moment. She loves to torment our dog, Ollie, or Lala. She rolls over him and he moans or grunts or licks her and she just falls to a giggly gob.

So we discovered that Nora knows her letter sounds. We have a the leapfrog alphabet magnets, bus, spinny wheel and board. They all say the sounds of the letter when touched. She's known O for a while but now she knows about 10 letter sounds. It is amazing. She'll see a D and say the duh sound. Or A she'll say apple. Or E she'll say eeee. And it is not isolated to just those toys. If we show her a flash card of a letter, she can tell us the sound or if we ask her to point to a letter on her alphabet place mat, she's able to do it. CRAZY!!! And she loves this song http://www.youtube.com/watch?v=DK9VPtz3EHQ and video. It was a song I used in teaching the sounds when I taught Kindergarten. (many moons ago) Anyway, pretty nuts.

Thanks for checking in
Lori

...and a happy new year!

2009-01-01T10:06:00.000-08:00

2009 has been so far so good. All 10 hours of it. Emma's friend Jane slept over last night and we had dinner with our good friends-the Wilsons and the Brodersons. Fun was had by all and we rocked the house on Rockband. Feeling a bit woosey this morning but good none the less.

Nora is great. She can say cookie now. It sounds more like gook-EEEE. But she can say it and she gets a cookie every time. I am hoping the positive reinforcement will get her to say more words. Or maybe she's so stinkin cute I can't help but give her what she wants!

I am hoping to find out the scoop on her preschool placement next week. Who knows when we'll get any info. I am not so worried anymore as to where she'll go. I just want to get there and get her settled in. She'll only have a week of school before Feb. break so I may just wait and start after the break. Grr.....

Anyway, wishing everyone a happy, healthy and stress free year!

Lori

Merry Christmas

2008-12-24T15:37:00.000-08:00

Happy Holidays, Merry Christmas, and Happy New Year from our family to yours. Wishing everyone HEALTH and happiness in 2009.

Love

Lori

Snowdays and ER visit

2008-12-20T08:38:00.001-08:00

So Nora has been fighting a bladder infection. On Wed. she had a 104.6 temp so we had to bring her to the ER b/c it was after 6 and her dr. was closed. After a catheter to get a urine sample and some fun waiting in a 4 x 4 room, we found out it was a bladder infection. And apparently, a 104.6 temp is not "unusual" for a toddler. I was afraid her brain was sizzling. So anyway, a big shot of antibiotics and we were on our way.

She seems to feel a lot better. Getting her to take her anti biotic is a struggle. We have to tie her down and practically funnel it in. But it seems to be doing the trick. She even had enough energy yesterday to go for a sledding session.

Speaking of snow, all last week, NO SCHOOL!!! What??? We had about an inch on the roads M & T so school was 2 hours late. Then the forecast was for snow on Wed. so they CANCELLED school the night before. Guess what, not a flake to be found and 35 degrees so the roads were bone dry. Nuts. Then Th & Fr it snowed so cancelled again. If we were in NY we wouldn't have even thought twice about it. Snowdays in NY had to be at least 12 inches of snow! Those were the good old days. So instead of a 2 week break, it was 3.

We go see Santa today and Emma will ask for all the things that I have no idea what she's talking about. Hopefully Santa will be able to bring at least one of her requests. Nora is easy. She just loves cars and babies right now. And she can say Baby! And she does a little rocking action when we sing rock a by baby and cuddles her doll. Very cute. She is also saying Ol-La for Ollie. It was Lala but she put in the Ol. Way to go Nora!

So only another month or so until we find out where she will be placed for preschool. Hopefully the EEU or Alki. I can't believe she's going to be 3 in Feb. Crazy couple of years.

Thanks for checking in!

Lori

snow and no naps

2008-12-15T08:27:00.000-08:00

Nora was a bit tuckered out the other night. Didn't even make it to the dinner table.

Loving the snow!

Freakishly large hands run in our family.

Nora has been very whiny lately and not sleeping well. Makes for a fun day let me tell ya. She won't have school today due to closures so we'll hunker down and stay warm. It is only 23 degrees today. I feel like I'm back in Albany.

Nora is still fascinated with all the ornaments and loves to bring them to me. We now have about 50 ornaments on the upper level of the tree and 12 on the bottom.

Well, I am off to make breakfast. Thanks for checking in.

Lori

Music and stuff

2008-12-05T11:26:00.000-08:00

Nora is starting to use pictures (PECS) to communicate. She has a group of songs she likes to sing and she'll find the picture of the song she wants and give it to us so we'll sing it for her. Wheels on the bus is the all time favorite. She is also using pictures a lot at school to follow a schedule or to tell the teachers what she wants. It is used a lot with kids who are non verbal.

She is starting to say more words, or sing words. We listen to a song that teaches letter sounds and she can sing the apple, baby, and elbow plus sounds. She is now using the word baby for her baby dolls too. So she learns a lot through music. I looked into a music therapy class for her. We'll see what her schedule is after she goes to preschool. Her OT also suggested hippotherapy but the only one in Seattle has a 2 year wait list.

On the preschool front, she got all her evals back and the district has all her info. She definitely qualifies for services. She is about 1 1/2 to 2 years behind in most areas. She understands more than she can say which is a good and her gross motor skills are good. It is a kick in the gut to find out how low she is but we see so much progress all the time. And she is not a very good test taker. She is very inconsistant and doesn't like to have to be directed for a long period of time. SO the results are a bit off I am sure.

We wrote a letter pleading her case to stay at her school (EEU) and not have to move. THe ball is now rolling. We should know by mid Jan where she will be placed. The program in Emma's school is full so if we don't get our 1st choice we won't even be able to get our 2nd choice either.

We just have to wait and see.

Thanks for checking in
Lori

Thanks

2008-11-26T18:07:00.000-08:00

Thanks to everyone who checks up on us. Nora is doing great. She is happy and healthy and making progress everyday. It is sometimes hard for us to see but every now and then she wows us with something. Lately she gets so excited to see me and exclaims "Ma Ma" real slow like. It has been almost 3 years and she is finally, FINALLY saying a word for me and only me. You may think it is the same meh-meh for car, or muh-muh for more or gimme that there thing that I want and can't get. But no, really it means me, mommy, mama, the one who gets up at 4 am to change pjs and sheets b/c she pees through her diaper or the one who shleps her to every corner of Seattle for every therapy known to man. ME I tell ya. Very nice I tell ya.

But many others who see Nora every now and then cannot get over the changes they see. Even over the weekend, her teachers see big changes in how she picks up new word, or sounds or signs. She flies through her work in class with her 1:1 teacher. She has started singing some words to songs instead of just humming or putting the same word for the whole song (eg: Emma, emma, emma, emma to Twinkle Twinkle or ba ba ba ba ba-BA BA ba ba to Blue Danube Waltz.) I think we are going to check into doing some music therapy along with sensory integration therapy. And maybe even hippotherapy (horse back riding). I think now is the time for her brain to explode with new pathways for learning. And exposing her to more things and more experiences can only help. I hope.

Everyone else is good. Alex and Emma have a stomach bug that will hopefully be gone by the time the turkey is done.

I am thankful that we can look forward with hope and optimism and not sadness. We'll all be stronger and more thankful for what Nora has gone through.

Happy Thanksgiving

Lori

Sickies

2008-11-23T07:28:00.000-08:00

We all are pretty sick around here. It started last week with Nora having a marathon puke-a-thon Tues. night. I was up every hour changing her crib. Emma stayed home Thurs. and I have laryngitis since then. Of course we had 2 events this weekend- Emma's school's auction Friday and Karaoke last night. Needless to say I was NOT singing. (Our friend Kevin rocked the Barry Mantilo though) I am sure if I had not been talking non stop my voice might have returned.

Nora is feeling fine now. She has started to get really frustrated because she can't communicate with us. If she wants something or is upset, she moans, cries, whines and throws a fit until she gets it. We have to figure out some way for her to tell us what she wants. She doesn't use PECS or use that many signs so it makes it hard for us to understand her.

Emma's parent/teacher conference is tomorrow so we'll see how Kindergarten is going for Emma.

Thanks for checking in!! Off to make pancakes.

Lori

Sensory disorder?

2008-11-14T09:24:00.000-08:00

Yesterday Nora's OT/PT at school asked me to fill out a sensory disorder questionnaire on Nora. When we first realized something was wrong with Nora, one of the issues was sensory problems. She still has some major issues- like not liking her hair or teeth brushed, she puts lots of stuff in her mouth, hates having her nose wiped, touches textures a lot, rubs skin (mine or her own) , she doesn't enjoy cuddling or being held against her will, and she won't use a cup-only sippy cups. Sounds pretty typical of a two year old I think. But I think she is more hyper sensitive to these things than other kids her age. I am not sure what this will do for her therapies. Maybe more OT and focus on sensory. I am not sure.

My cousin Kelly, her husband Dan and kids Zoe and Mason stopped by for dinner last night. It was so nice to see them. Emma and Zoe played so nicely and Mason and Nora were funny together. They were so happy and impressed on Nora's progress.

Thanks for checking in
Lori

Halloween and such

2008-11-02T19:31:00.000-08:00

Nora and Emma had a fun Halloween. Mim and Grandfather were here for a week visiting so it was extra fun. Nora was a ballerina (we tried a fireman and princess but she wouldn't stand the costumes) and Emma was Princess Leia. Our friend Dylan was Spidy. Nora got the hang of going up the steps to get a treat. Once she figured out that candy was involved, she was all in. But she did want to run into every house we came to. And the rain stayed away. Phew.

It was a very busy week. A trip to the pumpkin farm and corn maze (which took forever to find our way out), haircuts for all, basement projects, visits to the girls' schools, and lots of love from Mim and G-father.

School is going well. Nora is learning new things everyday. She now has about 10 words (some are just approximations-mo for more and la for light). But she is trying to communicate her wants and needs. Big progress. Still doesn't call me Mama, although she CAN say mama, just not to me. Grr.. Gaga is Dada and Emma is clear as day. Someday soon I hope.

She is starting to give up naps somewhat. If she sleeps too long during a nap, she gets up at the crack of dawn so I am trying to figure the whole sleep thing out.

Other than that, we are pretty much doing the daily grind. School, speech, play, sleep and eat. She is a happy happy girl.

Thanks for checking in

Lori

Agenesis of the Corpus Callosum

2008-10-22T13:04:00.000-07:00

Lately I have been reading more and more about Nora's condition, Partial Agenesis of the Corpus Callosum. I just added another link for the NODCC. I think I focused so much on the Infantile Spasms and seizures I didn't really think that Nora's delays were caused by the missing part of her brain. BUT as it turns out, she has many of the developmental delays related to ACC (agenesis of the corp. cal.) After going to the neurologist a few weeks ago, I realized no one really knows why she is delayed or what disorder category she fits into. Some of her symptoms or delays could also be chalked up to the seizures. It is so hard to tell. Regardless, it would be nice to be able to find a specialist in this area. There is a guy in San Fran, I think, that I may try to contact. It's just so hard to try to think so far ahead and wonder what she'll be like as a 19 year old. She may never talk, be potty trained or have a job but then again, she may. But hopefully with early intervention we'll make sure she reaches her full potential.

And that brings me to preschool. The ball has started rolling on her placement for preschool. When she turns 3 in Feb. she'll be moved to another class and maybe another school. I met with the district nurse and psychologist yesterday to discuss her delays, needs, strengths, medical history etc. Now they will put together a report to pass along to the special ed dept. who will try to decide which preschool is best for Nora. They of course try to put kids in neighborhood schools which theoretically makes sense. But I think the EEU is the best choice and Nora will hopefully get to stay. We won't find out until January.

That's all my thoughts of wisdom for the day
Lori

Pre school stress

2008-10-17T10:45:00.000-07:00

Hi- I have been stressing over what will happen to Nora in Feb. when she turns 3. Right now she is at a wonderful school, the EEU, in the birth to 3 program and we want her to stay there for preschool. BUT when she turns 3 the funding switches from state $ to school district $. Therefore she is part of the spec. ed prog. in the Seattle schools.

They decide where she goes for preschool. There are 3 developmental preschools in our area, one being at Alki where Emma is in Kindergarten. The others are a bit further. I went on tours of all 3 and they are good programs. Nora would do fine I am sure but it's just not the same.

The EEU is on the UW campus and is a teaching school but part of Seattle schools. They would have to pay to bus Nora to school. (I know, who puts a 3 yr. old on a bus?????) They try to put kids in programs as close to home as possible. But I want her to stay at the EEU for many reasons.
1) I think it is the best program for her,
2) we know all the staff (love them) and they know Nora (love her),
3) I have a huge support group of other parents and teachers
4) they have typical peers in the classes
5) they have a higher staff to student ratio and
6) it is a 5 day a week program.

We start the process next week to meet w/ the district and do testing etc etc. The biggest catch to all of this is if there is no space available in a preschool class at the EEU in Feb. then we go to the next school, Alki, and if there is no space there, to the next one etc etc. So it isn't really about what is best for Nora but if there is availability and transportation. And they said "You can always try to get back into the EEU next Fall". But of course I would probably not want Nora to have ANOTHER transition to a new school or something. Grrrrr.... I just want her to go to the EEU forever. Seriously, it is a huge building of love and goodness. Everyone knows us, Nora goes to the office secretary, Zee, every day as we leave and gives her a big hug. Some of her old grad student teachers are now teaching preschool so it would be just perfect.

Other than that, we have just been busy remodeling the basement, doing Kindergarten avctivities, getting ready for Mim and Grandfather to visit and Halloween.

Hope everyone is well.

Thanks for checking in
Lori

No news

2008-10-01T13:03:00.000-07:00

We've been pretty boring around here lately. We had our house painted dark blue with white trim and a burgundy door. Looks so much cleaner than our old dirty gray. And our basement is ready for the floors to be done, tile and carpeting. Then we'll finish the bathroom and painting and we'll have a playroom!

Nora is doing great. She seems to be learning a new trick everyday. She is trying to say tree, (tt) cheese, (chzzz) and apple (a-ball). She started pointing at the lights. She has never pointed at anything before. She'll touch point to something but never anything far away and to get someone's attention. She also said NuNu for Nora. I sometimes call her Nunu booboo as a nickname and as she looked in the mirror I said Nunu and she repeated it. It sounds different from her no no-neownewo. She's a subtle one that girl.

I will have her first transition meeting (into the public school system) Oct. 21. I'll get to tour 3 other developmental preschools in our area as well as her school, the EEU. One of the preschools is in Emma's school. That is probably my 2nd choice, my 1st choice is to stay where she is. There is just so much more at the EEU than anywhere else, more resources, more parent support, more kid support, more classroom options. Oh I hope I hope I hope she gets to stay. If there isn't a space for her then she has to go somewhere else.

Emma is doing well too. I volunteered in her class today to help with an art project. There are 28 kids-17 boys. Yes 17 boys. That's a lot of boys . And Emma is the tiniest kid in the class. She apparently likes to chat with her neighbors. Her teacher says she is quite social. Hmmm....
Emma now wants to be Princess Leia from Star Wars. Not Dorothy for the Wiz of Oz. She was the witch last year. We let her watch Star Wars and she is now hooked.

Thanks for checking in
Lori

Normal

2008-09-19T15:58:00.000-07:00

We went to the neurologist today to follow up on Nora's last EEG. He said it looked normal. Hmm. I asked if it's normal for HER or just normal. He said normal. But this is only a slice of time that we are seeing and it may not be normal all the time. So it could look not normal at another time. But she looks good. So hooray for that.

And we keep her on her current medication-lamictal until next May when we see him again and start weaning. I was hoping to get off all meds but he said that kids with IS who are on meds, seizure free, for 2 years have only a 30% chance of recurrence but kids who go off earlier have a 70% chance of recurrence. My view was that she seemed to do so well once off zonegran that she'd do even better med free. nope.

Then I brought up the fact that she is missing part of her corpus collasum and whether or not that is causing her delays rather than the seizures. Of course no one can tell us for sure. There was SOMETHING that made her brain not form right when she was developing. We don't know what THAT is. THAT is what made her have cysts, THAT is what made her brain not grow an important piece, and THAT is what made her have seizures. PROBABLY. Once again, it is a big question mark.

SO my next concern is what we can do now. Apparently we are doing everything known to man (or at least the neuro) at this time. But I want more. I want to see more progress. I want her to be so far beyond where she is. Don't get me wrong, I am so thankful she is doing so well and progressing but it is just not fast enough. What about when she turns 3 and we have to switch to the public school district? What if they don't give her everything she needs? I won't be able to watch through a window like I can now to make sure they know what she needs or is trying to say. If she isn't fixed by the time she's 3 how will I know if she will ever be? So once again I will stress and agonize for the next 5 months worrying about what school she'll be in when her birthday rolls around. awesome.

Lori

No-no

2008-09-14T07:07:00.001-07:00

Nora is such a stinker. I'll say no no Nora when she climbs on the table, I'll say no no Nora when she tries to sticks her hand in the toilet, I'll say no no Nora when she grabs the mouse when I am on the computer etc. etc. Now, every time she goes to do one of the forbidden activities, she'll say newoo newoo (no no) and then do it anyway. So much for no no.

And everyone is Emma. She'll see a girl at the park and exclaim EMMA! She'll she herself in the mirror and exclaim EMMA! She'll see the mailman and exclaim EMMA!

And everything is BA. Her cup is BA. A book is BA. Ollie is BA. Everything but Elmo. and Emma.

Alex has been in China since Mon. and gets back tomorrow. Yeah! The drywall guys start on the basement tomorrow. Yeah!!! And Nora starts school again tomorrow-yeah!!!

Gretchen and I have been ignoring our children while playing Rock Band on Wii. I highly recommend it. (I'm like Eric Clapton on the guitar by the way) Addicting and fun.

Thanks for checking in
Lori

fever

2008-09-07T09:24:00.000-07:00

So Nora has had a fever for a week now. It hovers around 101 but goes down to 99 and up to 102. We went to the Dr. on Thurs. and no ear infection. I had to try to get a urine sample (urinary tract infection) but no luck. (they give you this bag to stick to her to try to catch some pee) Didn't work.

Then she seemed better on Fri. and we actually saw another Dr. for a consultation for vaccines. He will separate the MMR for her and sees a lot of kids with special needs. He has experience with kids who have IS, Agenesis of the corpus callosum and cysts. She still had no ear infection.

So Sat I went back to get more pee bags and got a little sample of course the clinic is closed by noon. So I have to keep it in the fridge. But today she still has a temp of 101. There is an after hours clinic at the children's hospital. They will probably give her a catheter to get some urine. Not fun. But a week of fever is nuts. AND Emma has a bday party today so Alex will have to bring Nora by himself. UGGGGG.

Why does this always happen to poor Norsie. Nothing is ever easy. She is going to hate being held down and have a catheter put in. but I don't think there is any other way to see if she has an infection.

Emma seems to like kindergarten although it is hard to get any info from her. Hopefully she'll make some new friends soon and feel like part of her new school (me too!).

Thanks for checking in
Lori

Gak!

2008-09-01T18:46:00.001-07:00

Emma and I made Gak the other day. http://homeschooling.gomilpitas.com/extras/Gak.htm

Nora really liked playing with it. Yes she did try to eat some, but mostly she just liked to feel it. It's cool and squish. It was so nice watching Emma and Nora enjoy the same activity. It really is fun to feel. And easy to make.

Only 1 more day until the big K. Emma is getting excited. And I am ready. Alex has been working in the basement non stop for the past 3 days so I had my fill of girl bonding time. School here we come!! And Nora starts back up the week of the 15th.

Happy Labor Day!

Lori

Haircuts, family and fun

2008-08-27T11:00:00.000-07:00

Nora's hair before we went to NY

Nora's hair after we went to NY

We are finally back from our 11 day trip to NY. We were supposed to be back Sun. night but got delayed and came back Mon. night instead. It was so great to be back to see my family and friends. We did lots of fun things.

First things first, haircuts. We all got 'em. Thanks Bev!!!

Then an overnight at Loon Lake at Uncle Mark's camp. (Aunt Maura's too) Katie and Brynna did a great job keeping Emma occupied and entertained. Mim and Aunt Maura watched Nora and Alex and I relaxed. Very nice. Lots of boat riding, lake swimming, sand playing, smores eating and fun.

We went back to Mim and Grandfather's and saw all of our friends, the Wilsons, the Dischiavos, the Martinovich/Fitzpatricks, the Corrs, the O'Sheas, the Lawrences. Fun fun. Alex and I got out to eat, saw a movie and I got a girls night with Jen, Amy and Erin.

Now we are back to the rain. and chores. and taking care of my kids by myself! It is so nice to let Mim take over (and I get to read a book).

Emma starts school in 1 week!!!!! Very exciting.

Thanks for checking in

Lori

EEG

2008-08-11T13:43:00.001-07:00

So Nora had her EEG last Wed. It went fine. We had to wake her up early (they said 4 am) around 5:30 am. She had a busy day, we went to a park for a field trip with her class then had lunch. She was nice and tired by 1 pm.

It takes about 30 minutes, maybe more, to get all the electrode things on her head. She screamed, not whimpered or cried but SCREAMED the entire time. I thought she was going to make herself throw up she was so upset. They have to swaddle her in a big blanket because she fights so hard to get away so she was all sweaty. 1st they have to measure and mark her head, then clean the spots then they finally attach the things on her head and THEN they wrap her head in gauze. Not fun for any of us. Then the expect her to be able to sleep with all this stuff on her head. She actually fell asleep within a minute of sitting on my lap. Poor girl. Tuckered her right out. She slept for 1/2 hour or so then we had to wake her up to take everything off again. Huh. Hopefully the results will be good and we can finally get her med free. We don't hear anything until we meet the nuero in Sept. This could be her last EEG for a long time. Yippie!

Emma's 5th bday is Thurs. We had her party on Sat. She had a lot of fun and got lots of nice presents from her friends.

So we are off to NY on Friday for 10 days so I probably won't post anything for a while.

Hope all is well!!!

Lori

Black Sheep

2008-08-03T17:15:00.000-07:00

Nora has been singing the baa baa black sheep song for a while now and I think she has perfect pitch. (well, at least to my ear) But she sings "baa baa BAA BAA ba ba ba ba baaaa" to the exact tune. She does it all by herself without any prompting. It is so funny. And if she hears the itsy bitsy spider song she does spider hands and hums along. So cute. But after 30 rounds of the spider song, I am ready to lose it.

I had a great day. I finally used my mother's day facial gift fur-ticket. (as emma called it) It was lovely. And Emma and I went to our friend Jane's 5th birthday party in the morning. Alex stayed with Nora all day and is now spent on the couch. Hmmm,,, it's a bit tiring to stay home and entertain our 2 year old isn't it? I had a relaxing day anyway:)

Emma goes to Zoo camp all week and Nora has her EEG on Wed. Emma's party is on Sat. and then we are off to NY for 10 days. Time flies.

Hope everyone is well and having a great summer
Lori

EEG scheduled

2008-07-25T17:59:00.000-07:00

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

Back from vacation

2008-07-16T07:33:00.001-07:00

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

Change it up a bit

2008-07-07T19:29:00.000-07:00

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