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
This is Nora's story... Nora was diagnosed with Infantile Spasms April 24, 2007. Infantile spasms is a rare seizure disorder. Nora was put on an anti seizure medication April 26th called ACTH. Her seizures were gone after 1 week of treatment and haven't been back. Nora also has partial agenesis of the corpus callosum and arachnoid cysts in her brain. For more info, check out the history section below.
Wednesday, October 22, 2008
Friday, October 17, 2008
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
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
Wednesday, October 1, 2008
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
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
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