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Lily Bean's Infantile Spasms Journey

Lily Bean's Infantile Spasms Journey. Thursday, November 26, 2009. Turns out yesterday (11/25) was the 4 year anniversary of Lily's diagnosis of Infantile Spasms. It is shocking to me that we've survived four years of this devastating disease. Shocking to me that we are no closer to seizure control than we were four years ago, yet Lily walks, smiles, laughs, sits at the table, uses pictures to communicate, and above all else - is HAPPY. Of course, when I read the description - I knew. HIPS-uh-rith-MIA...

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Lily Bean's Infantile Spasms Journey | lily-bean.blogspot.com Reviews

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Lily Bean's Infantile Spasms Journey. Thursday, November 26, 2009. Turns out yesterday (11/25) was the 4 year anniversary of Lily's diagnosis of Infantile Spasms. It is shocking to me that we've survived four years of this devastating disease. Shocking to me that we are no closer to seizure control than we were four years ago, yet Lily walks, smiles, laughs, sits at the table, uses pictures to communicate, and above all else - is HAPPY. Of course, when I read the description - I knew. HIPS-uh-rith-MIA&#4...

<META> KEYWORDS

1 a thanksgiving anniversary

2 couldn't breathe

3 sobs how

4 epilepsy

5 a catastrophic epilepsy

6 infantile spasms

7 be so horrific

8 two weeks

9 i knew

10 sigh

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a thanksgiving anniversary,couldn't breathe,sobs how,epilepsy,a catastrophic epilepsy,infantile spasms,be so horrific,two weeks,i knew,sigh,she has autism,photo by,michelle enebo,posted by,katie,6 comments,labels ei,everyday life,meds,milestones,sniffle*

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Lily Bean's Infantile Spasms Journey | lily-bean.blogspot.com Reviews

https://lily-bean.blogspot.com

Lily Bean's Infantile Spasms Journey. Thursday, November 26, 2009. Turns out yesterday (11/25) was the 4 year anniversary of Lily's diagnosis of Infantile Spasms. It is shocking to me that we've survived four years of this devastating disease. Shocking to me that we are no closer to seizure control than we were four years ago, yet Lily walks, smiles, laughs, sits at the table, uses pictures to communicate, and above all else - is HAPPY. Of course, when I read the description - I knew. HIPS-uh-rith-MIA&#4...

INTERNAL PAGES

lily-bean.blogspot.com

1

Lily Bean's Infantile Spasms Journey: November 2009

http://lily-bean.blogspot.com/2009_11_01_archive.html

Lily Bean's Infantile Spasms Journey. Thursday, November 26, 2009. Turns out yesterday (11/25) was the 4 year anniversary of Lily's diagnosis of Infantile Spasms. It is shocking to me that we've survived four years of this devastating disease. Shocking to me that we are no closer to seizure control than we were four years ago, yet Lily walks, smiles, laughs, sits at the table, uses pictures to communicate, and above all else - is HAPPY. Of course, when I read the description - I knew. HIPS-uh-rith-MIA&#4...

2

Lily Bean's Infantile Spasms Journey: Raffle Results!

http://lily-bean.blogspot.com/2009/08/raffle-results.html

Lily Bean's Infantile Spasms Journey. Sunday, August 30, 2009. About a month ago, my wonderful cousin gave us a Seattle Sounders. Jersey signed by all the players on the team to auction off on eBay, and use that money for Lily's hippotherapy. I asked my brother for a little help writing the auction description, and he had an idea to actually run a raffle for the jersey. He took the idea and ran with it, and tonight we pulled the winning ticket. John raised $525, enough for FIVE hippotherapy.

3

Lily Bean's Infantile Spasms Journey: September 2009

http://lily-bean.blogspot.com/2009_09_01_archive.html

Lily Bean's Infantile Spasms Journey. Tuesday, September 8, 2009. The first day of school! First things first: Lily's MRI on Friday was NORMAL. This means she is not having the same side effect of vigabatrin that she had last time she was on it. HOORAY! Vigabatrin has been a great medication for helping control seizures (though we're not seizure free), and I would have been VERY disappointed to have to take her off of it. I think it's been great for her development as well. Walking Lily up the driveway:.

4

Lily Bean's Infantile Spasms Journey: Woefully behind

http://lily-bean.blogspot.com/2009/08/woefully-behind.html

Lily Bean's Infantile Spasms Journey. Friday, August 14, 2009. I am woefully behind updating Lily Bean's blog. In June, Lily completed her first year of Developmental Preschool! School starts up in about three weeks, so I'm really looking forward to this. Also exciting is that they are piloting an inclusion program this year! Hank is going to get to go to school with Lily two days per week! I'm am absolutely over the moon about this! We are having a revision IEP meeting in a couple weeks. We knew tha...

5

Lily Bean's Infantile Spasms Journey: April 2009

http://lily-bean.blogspot.com/2009_04_01_archive.html

Lily Bean's Infantile Spasms Journey. Wednesday, April 15, 2009. So much going on! Wow, what a few weeks it has been. Lots to share! Todd and drove to Jordan's memorial service on March 28. I'd never met Leslie or Devon in person, so it maybe seemed a little odd to spend a day travelling to support their family. But that's the weird thing with this community of IS parents.you don't need. Devon read an incredibly moving eulogy during the service, and the text can be read here. Sometimes, I don't know!

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camsinfantilespasms.blogspot.com

Cameran's Infantile Spasms: November 2009

http://camsinfantilespasms.blogspot.com/2009_11_01_archive.html

Sunday, November 01, 2009. Well since Ive got an extra hour I figured I blog with it.LOL! This day has seemed to really drag on and has taken its toll on the kids. Cami was begging for bedtime at 6:30 and Caleb said how much longer till bedtime I say its not even 7:00 yet.awwwww he said.that was a first, normally he is my night owl! But with it being so dark out so early it has really thrown us all off! Besides the time change being a bummer we did enjoy the beautiful bright sun shine of a day today!

camsinfantilespasms.blogspot.com

Cameran's Infantile Spasms: September 2010

http://camsinfantilespasms.blogspot.com/2010_09_01_archive.html

Thursday, September 23, 2010. Still here.Still breathing. Man how time gets away from you! Cant believe I havent posted since June! And so much has happened since then. One main thing is the kids have started back to a new school and they LOVE it! Its so great to have them at the same school, Cami really took to it well, she loves all her new friends and her new teachers! Couldnt help but laugh and feel sorry for them in all the same, shes a busy gal! A few weeks back she brought some pictures home and I...

camsinfantilespasms.blogspot.com

Cameran's Infantile Spasms: June 2010

http://camsinfantilespasms.blogspot.com/2010_06_01_archive.html

Tuesday, June 22, 2010. Man the fist day of summer was yesterday and it was another scorcher of a day! Poor kiddos have been stuck in the house because its too hot to be outisde. So when indoors you just have to make do. Right now they are pretending they are in a car driving through different states (Caleb is also the GPS) and Cami keeps putting her stinky feet in his face.LOL! I also have a 9.5 month old that is trying to walk. Anyday now she will literally be into everything! He and my mom would have ...

devonandleslie.blogspot.com

The Rowes in the Rose City: August 2007

http://devonandleslie.blogspot.com/2007_08_01_archive.html

The Rowes in the Rose City. Join Devon and me (Leslie) on the journey through life with Avery, Jordan, and Birkeley from Vancouver, Washington, a suburb of Portland, Oregon - the Rose City. The Rowes In The Rose City 2. Jordan's Journey, So Far. Leslie Driver-Rowe Devon Rowe. View my complete profile. Life In The Woods. News from The Top Of The World. Musings From A Life Of Love. Photos From The Woods. Lily Bean's Infantile Spasms Journey. And The Time Just Keeps On Ticking. Getting It All Out. After 19&...

devonandleslie.blogspot.com

The Rowes in the Rose City: January 2009

http://devonandleslie.blogspot.com/2009_01_01_archive.html

The Rowes in the Rose City. Join Devon and me (Leslie) on the journey through life with Avery, Jordan, and Birkeley from Vancouver, Washington, a suburb of Portland, Oregon - the Rose City. The Rowes In The Rose City 2. Jordan's Journey, So Far. Leslie Driver-Rowe Devon Rowe. View my complete profile. Life In The Woods. News from The Top Of The World. Musings From A Life Of Love. Photos From The Woods. Lily Bean's Infantile Spasms Journey. An OMSI Date With Kate. A More Mellow Saturday For Jordan. This i...

devonandleslie.blogspot.com

The Rowes in the Rose City: Bye Bye Grandpa Grandpa

http://devonandleslie.blogspot.com/2009/02/bye-bye-grandpa-grandpa.html

The Rowes in the Rose City. Join Devon and me (Leslie) on the journey through life with Avery, Jordan, and Birkeley from Vancouver, Washington, a suburb of Portland, Oregon - the Rose City. The Rowes In The Rose City 2. Jordan's Journey, So Far. Leslie Driver-Rowe Devon Rowe. View my complete profile. Life In The Woods. News from The Top Of The World. Musings From A Life Of Love. Photos From The Woods. Lily Bean's Infantile Spasms Journey. Bye Bye Grandpa Grandpa. Bye Bye Grandpa Grandpa.

devonandleslie.blogspot.com

The Rowes in the Rose City: February 2009

http://devonandleslie.blogspot.com/2009_02_01_archive.html

The Rowes in the Rose City. Join Devon and me (Leslie) on the journey through life with Avery, Jordan, and Birkeley from Vancouver, Washington, a suburb of Portland, Oregon - the Rose City. The Rowes In The Rose City 2. Jordan's Journey, So Far. Leslie Driver-Rowe Devon Rowe. View my complete profile. Life In The Woods. News from The Top Of The World. Musings From A Life Of Love. Photos From The Woods. Lily Bean's Infantile Spasms Journey. Bye Bye Grandpa Grandpa. Bye Bye Grandpa Grandpa.

devonandleslie.blogspot.com

The Rowes in the Rose City: October 2008

http://devonandleslie.blogspot.com/2008_10_01_archive.html

The Rowes in the Rose City. Join Devon and me (Leslie) on the journey through life with Avery, Jordan, and Birkeley from Vancouver, Washington, a suburb of Portland, Oregon - the Rose City. The Rowes In The Rose City 2. Jordan's Journey, So Far. Leslie Driver-Rowe Devon Rowe. View my complete profile. Life In The Woods. News from The Top Of The World. Musings From A Life Of Love. Photos From The Woods. Lily Bean's Infantile Spasms Journey. Seaworld, San Diego, Again. Legoland, Carlsbad, California. Neigh...

camsinfantilespasms.blogspot.com

Cameran's Infantile Spasms: June 2009

http://camsinfantilespasms.blogspot.com/2009_06_01_archive.html

Monday, June 15, 2009. AND we are feeling it and loving it except for the heat that is ;). The kids are working on their tans living and loving it up outside playing everyday! The cast didnt slow Cami down any, in fact we are happy to say that smelly thing came off last week! So hello swimming pool! Here's Cameran getting her cast off:. Thats right we had Caleb front and center! Making sure he knew what you have to go through with a broken bone. No more of these please! This week Cami has 2 more Dr appts...

camsinfantilespasms.blogspot.com

Cameran's Infantile Spasms: May 2010

http://camsinfantilespasms.blogspot.com/2010_05_01_archive.html

Thursday, May 27, 2010. Our big girl is growing up so fast. She just graduated her Special Needs Preschool on May 26, 2010. In August of 2010 she will be starting CDC Kindergarden room at a new school. They held a little graduation for these little special guys at her school and I tell ya it was the sweetest. Cami had no clue what was going on but she was just thrilled to be there with her friends! She received a Laffy Taffy award for having a Happy go Lucky personality! This was day 2. I started this bl...

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Lily Bean's Infantile Spasms Journey

Lily Bean's Infantile Spasms Journey. Thursday, November 26, 2009. Turns out yesterday (11/25) was the 4 year anniversary of Lily's diagnosis of Infantile Spasms. It is shocking to me that we've survived four years of this devastating disease. Shocking to me that we are no closer to seizure control than we were four years ago, yet Lily walks, smiles, laughs, sits at the table, uses pictures to communicate, and above all else - is HAPPY. Of course, when I read the description - I knew. HIPS-uh-rith-MIA&#4...

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