Thanks

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

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?

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

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

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

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

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