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.
Sunday, March 29, 2009
Random
Here are some random photos of the girls. We went to the Seattle Aquarium a few weekends ago. Nora did pretty well. It's not as stressful taking her to crowded places anymore. She actually looked at some of the displays.
We are also taking a music class on Wednesdays-Kindermusik. She is starting to join in on the group activities and follow along with hand motions etc. The first few classes she just ran around the room saying Hi to everyone. Now she'll sit and follow along for most of the class.
She talks non stop, all day long. She'll talk over you if you are talking so you'll pay attention to her. She's very loud. And does not like to be ignored. If I am on the computer she'll just yell -"Sit, up, sit, mommy, sit, sit sit, sit......" until I go nuts and let her sit with me. Then she'll mess with the keyboard while I'm typing. Little stinker. And she loves the computer. Her teacher sent us a link to see pictures of her class and video clips. She'll ask to watch it over and over and over. She'll sit here and name every kid in the class while their pictures are on the slideshow.
Nothing else exciting going on here. The girls have next week off for spring break and we are staying home. There is no music, ballet or speech all week. It is going to be a loooooonngggg week. We like our schedules. Or at least I do.
Thanks for checking in
Lori
Tuesday, March 24, 2009
Saddened
I just read one of the blogs that I check almost every day, about a 4 year old little girl with many struggles, including infantile spasms, named Jordan. She passed away yesterday. It was unexpected and in her sleep.
This family is amazing. The Rowes live in Vancouver WA which is about 2 hours from here. I have read their blog for more than a year and unfortunately the old blog had been lost and they just started a new one. I am just so saddened by this news and can't even imagine the sorrow they are experiencing.
My thoughts and prayers are with them.
http://devonandleslierowe.blogspot.com/
This family is amazing. The Rowes live in Vancouver WA which is about 2 hours from here. I have read their blog for more than a year and unfortunately the old blog had been lost and they just started a new one. I am just so saddened by this news and can't even imagine the sorrow they are experiencing.
My thoughts and prayers are with them.
http://devonandleslierowe.blogspot.com/
Sunday, March 15, 2009
Explosion
Ollie our dog
There has been an explosion of learning and language over the past few weeks. Nora is a non stop chatter box. She points to everything and labels it. House, shirt, car, bird, shoe, Ollie, monkey, cat, Mommy, anything she doesn't know she wants to know the word for it. She is counting up to 20 and is pretty good at colors. She yells for me from everywhere in the house- Mommy! Mommy? Mommy! Hello Mommy. Hello.
She loves her "fends" at school. They have placemats with everyone's pictures on it and she points to all the pictures then to the friend and says their names. Her favorite is Dorian. A very cute little guy in her class. But she knows everyone even if she can't say their name.
Nora and I have a game where I'll ask her to "Say.... and then a word." She now goes around and says to me "Mommy, say..... Dorian, waits for me to say it and then say.....Victor", and so on. (and on and on)
We were singing the hokey pokey today and at the very end she yelled "Pokey". I didn't even think she knew the game. She used to play it but I have never seen her participate. And then she wanted to tell us what to sing, foot, head, elbow. That is a huge concept. She does the same thing with Old MacDonald. We wait for her to insert the animal (usually either cow or cat) and then we finish the song.
Emma is feeling under the weather. There is a bug going around her school and she has a 103.5 temp today so will probably have a stay home day tomorrow. She has napped all day which probably means up all night. Fun fun. Hopefully it won't turn into a puke fest.
My mom (hi Bev!) starts chemo soon so please send some good thoughts her way. And if you are a praying kind of person, maybe a prayer or two. She is very positive and upbeat so I hope she breezes through her treatments without any sickness. We love you!!
Thanks for checking in
Lori
She loves her "fends" at school. They have placemats with everyone's pictures on it and she points to all the pictures then to the friend and says their names. Her favorite is Dorian. A very cute little guy in her class. But she knows everyone even if she can't say their name.
Nora and I have a game where I'll ask her to "Say.... and then a word." She now goes around and says to me "Mommy, say..... Dorian, waits for me to say it and then say.....Victor", and so on. (and on and on)
We were singing the hokey pokey today and at the very end she yelled "Pokey". I didn't even think she knew the game. She used to play it but I have never seen her participate. And then she wanted to tell us what to sing, foot, head, elbow. That is a huge concept. She does the same thing with Old MacDonald. We wait for her to insert the animal (usually either cow or cat) and then we finish the song.
Emma is feeling under the weather. There is a bug going around her school and she has a 103.5 temp today so will probably have a stay home day tomorrow. She has napped all day which probably means up all night. Fun fun. Hopefully it won't turn into a puke fest.
My mom (hi Bev!) starts chemo soon so please send some good thoughts her way. And if you are a praying kind of person, maybe a prayer or two. She is very positive and upbeat so I hope she breezes through her treatments without any sickness. We love you!!
Thanks for checking in
Lori
Wednesday, March 11, 2009
The Short Bus
Waiting for the bus-not so happy.
On the bus-seems OK.
I remember in junior high when people would make fun of the not so popular kids by saying they ride the "short bus". People still use the term as adults I am sure. Basically if you ride the short bus, there is something mentally wrong with you. Almost as bad as being called retarded.
I remember in junior high when people would make fun of the not so popular kids by saying they ride the "short bus". People still use the term as adults I am sure. Basically if you ride the short bus, there is something mentally wrong with you. Almost as bad as being called retarded.
My kid rides the short bus. There you go.
She is now officially taking the bus to school. On Monday, I rode with her. The bus driver, Brian, was trying out the route and picked her up 1st and we were on for an HOUR. Not so good. Today he picked her up last so she should only be on for about 20 minutes. And she'll only take it M/W/F for now. And only to school. Maybe someday she'll take it home.
Nora loves buses. And she was fine getting on the bus but I don't think she likes the seat belt, even though it is a 5 pt. harness like her car seat. Hopefully, she'll learn to love the bus because it will really make my life a tad bit easier and not so much like a chauffeur. I will still pick her up everyday.
She is doing great. Her speech improvements are enormous. She can say almost anything and wants to know what everything is. She is still only putting 2 words together spontaneously. But she is able to tell us what she wants. So awesome. It gives us so much hope that she'll be able to talk sooner than later.
She is fitting right in at preschool. She can say all of her friends names (kinda). I think she likes it. She still has to take breaks and she doesn't always participate appropriately (yesterday they played musical chairs and she had no clue what she was supposed to do) but she had fun.
Alex is in CO until Friday so I'm flying solo once again. I got away for a night with some moms from the EEU on Sat. We went to San Juan island for an overnight. It was so nice to get away. And to be with moms who have kids with special needs is nice too. We all know what we are feeling even though some kids have more severe delays and some minor, it is still helpful to be able to talk about it.
Emma is doing great. She is keeping me busy too. Ballet, swim lessons and play dates. She's a good girl.
Thanks for checking in
Lori
Wednesday, March 4, 2009
fancy new camera
Alex got me a new camera for my birthday (a bit early). It is a canon rebel. I have no idea how to use it yet but the auto button seems to take really nice shots. Better than my point and shoot. Hopefully I will dazzle you and amaze you all with my beautiful photography soon.
Nora is good. We had music class today and she did great. I need to get her in the car and off to preschool.
Thanks for checking in
Lori
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