There are people out there in the blogisphere that I know well because of our connection through our IS kids. They may not know me or Nora's story but I still feel connected to their stories. And even though I have never met Bennett I am thinking about him today. He is having brain surgery to rid him of daily seizures. Just like Sophie did and how Trevor will soon. Bennett may also have a tumor which is a whole 'nother ball of wax.
It takes my breath away to think about Bennett's parents waiting to get their little boy back. How hard it has to be. Unimaginable. Good luck Bennett!
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.
Thursday, August 27, 2009
Tuesday, August 25, 2009
like a fish
Emma had a fun swim party on Sunday. Nora LOVES the water. She had a fit while we waited for our turn in the pool. She wanted in and wanted it now. She was able to stand in the shallow area and had so much fun. She puts her face in and holds her breath. It is time for swim lessons I think.
School starts on the 21st for Nora. She is ready for it and I am ready for it. It's been a fun summer but Nora has been lacking some structure. I am ready for her to keep moving on in development and she does so well in school. It is time for potty training (I hope). My back is killing me from lifting her to change her diaper. She's a big girl. And she still won't drink from an open cup or straw. Only her sippy cup. And not any sippy cup, just the playtex kind. So if I forget a cup, she won't drink. Hopefully Teacher Jessica can remedy that this year.
Emma starts a new school this year. After lots of debate, we are putting her into a private Catholic school. It has a great reputation and we think she'll do well. And the uniforms are so cute.
Thanks for checking in.
Lori
Monday, August 17, 2009
Birthday girl
Emma Aug. 2003
Emma and friend Janey on Emma's 6th birthday
Emma with cousins Brynna and Katie in NY
Friday was Emma's 6th birthday. She'll start 1st grade soon. We had her check up at the pediatricians today and saw a brand new little guy who was a preemie too. He weighed 3 lbs 9 oz. Emma was 4 lbs. 5 oz. when she was born but went down to 3- 11. I told her she was that little when she was born. It is so hard to believe she is 6. Time flies. We will have her friend birthday party next weekend. Pool party time!
Nora is great. No changes since she has been off of her medication. Her school doesn't start until Sept.21. It's been a long break. I am sure she'll be glad to get back.
Thanks for checking in
Lori
Sunday, August 9, 2009
All done with meds
Norsie
Cousin Katie and Emma at the Saratoga children's museum
Cousin Katie and Emma at the Saratoga children's museum
Emma and Brynna
Emma and Zoe
Nora and Grandfather
Mim and Nora
Emma and Zoe
Nora and Grandfather
Mim and Nora
Today was Nora's last day of her seizure medication. 5 mg. of Lamictal. Now she is med free. Kinda scary. She's been on medication since April 25, 07 when she was put on ACTH and zonegran. And she's been seizure free since May 2, 07.
In the past 2 years she has learned to walk, run, talk, clap, wave, watch Elmo, say mommy, sleep in a bed, not need a car seat on a plane, go down stairs unassisted, feed herself with a fork, pretend, give kisses and hugs, say I love you, know her letters and sounds, read books and just be happy. She is such a happy little girl. She likes to go outside, run and play. Everyday is so much fun for her. We are so thankful.
We have been home from NY for a week. We jumped right back into it. Emma had swim lessons all week, Nora speech, I got ready to host a baby shower yesterday. Alex went back to work. And our computer was fixed finally. Still have some tinkering to do but it's up and running. Phew.
I will post more soon. Emma turns six on Friday! yikes
Thanks for checking in
Lori
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