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
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.
Monday, January 26, 2009
Saturday, January 17, 2009
Mom-mee
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
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
Thursday, January 8, 2009
VCUG
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
Thanks for checking in
Lori
Tuesday, January 6, 2009
The word
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
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
Thursday, January 1, 2009
...and a happy new year!
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
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
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