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
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.
Friday, February 20, 2009
Saturday, February 7, 2009
Thursday, February 5, 2009
Last day of toddler class
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
Sunday, February 1, 2009
Birthday girl and dad
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
Monday, January 26, 2009
new words
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
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
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
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