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
Friday, September 19, 2008
Normal
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
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
Sunday, September 14, 2008
No-no
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
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
Sunday, September 7, 2008
fever
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
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
Monday, September 1, 2008
Gak!
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
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