Our youngest daughter, Elizabeth, was diagnosed with severe epilepsy when she was three months old. This blog is for us to journal some thoughts as well as to keep friends and family informed of her health.
Wednesday, July 11, 2012
A new tooth!
Lizzie officially has tooth #6! She's going to look a little crooked when it comes all the way in. She already has the two front and center teeth on the top and bottom, and one tooth to the right of those on the bottom. This new tooth is to the left of the ones on the top. No matter, I'm sure her lopsided grin will be just as cute as the one she already has!
Sunday, July 8, 2012
Walking...but not talking
Lizzie is a walker! She usually only does 2 or 3 steps at a time, but she can take as many as 6 or 7, and then she plops down. We're trying to have her practice as much as she's willing, but it's slow going. I'm sure before long she'll be running and I'll be asking myself, "Why again did I want her to walk?" She does better with the walking if she can hold a toy in her hand. Not a stationary toy, mind you, just something to hold onto. I guess it gives her a feeling of security. Her therapist said that's not uncommon for a lot of kids.
We are also trying to get Lizzie to make more sounds. She blows raspberries and makes loud "aaaaaaah" noises, and sometimes she even shrieks loudly in the key of "ear-splitting". I keep saying she's going to sing soprano in the choir someday. But she doesn't vocalize a lot of consonant sounds; occasionally, but not often. She says "mama" and knows that it goes with me, and she says "no" but I'm not sure she really knows what that one means. Once in a while we'll get a "dada" out of her too. We have tried teaching her some signs: more, finished, milk, water, eat, drink, peach, and cheese, and waving for hi and bye-bye. "More" and waving are the only ones she does consistently, but we'll keep working on it.
The doctor keeps saying that she is going to have developmental delays, but so far we haven't really noticed any big ones. Maybe language is going to be where we see a delay? Time will tell.
We are also trying to get Lizzie to make more sounds. She blows raspberries and makes loud "aaaaaaah" noises, and sometimes she even shrieks loudly in the key of "ear-splitting". I keep saying she's going to sing soprano in the choir someday. But she doesn't vocalize a lot of consonant sounds; occasionally, but not often. She says "mama" and knows that it goes with me, and she says "no" but I'm not sure she really knows what that one means. Once in a while we'll get a "dada" out of her too. We have tried teaching her some signs: more, finished, milk, water, eat, drink, peach, and cheese, and waving for hi and bye-bye. "More" and waving are the only ones she does consistently, but we'll keep working on it.
The doctor keeps saying that she is going to have developmental delays, but so far we haven't really noticed any big ones. Maybe language is going to be where we see a delay? Time will tell.
Monday, June 18, 2012
St. Louis walk
We had a great time at the Epilepsy Walk in St. Louis! It was hot and humid, but we did fine. We had a lot of people on Lizzie's team; us, Tom's parents, his sister and brother-in-law and their kids, and two of Tom's friends from high school and their families. After the walk there was a huge bubble machine for the kids, cotton candy, and Cinderella came for a photo opportunity with the kids. It was an extra special day because it was also Tom's birthday!
Between the walk in Kansas City in April and the walk in St. Louis this weekend, Lizzie's Team raised over $1100 for the Epilepsy Foundation. Yay! A HUGE THANK YOU to all who came out and walked with us, or who made a donation to the team. We are definitely planning on walking again next year and would love to have even more people walk with us! We'll let you know when we have more information about dates and locations of the 2013 Epilepsy Walks.
Here's a picture of Lizzie "walking" across the finish line with a little help from Daddy:
Between the walk in Kansas City in April and the walk in St. Louis this weekend, Lizzie's Team raised over $1100 for the Epilepsy Foundation. Yay! A HUGE THANK YOU to all who came out and walked with us, or who made a donation to the team. We are definitely planning on walking again next year and would love to have even more people walk with us! We'll let you know when we have more information about dates and locations of the 2013 Epilepsy Walks.
Here's a picture of Lizzie "walking" across the finish line with a little help from Daddy:
Wednesday, May 30, 2012
Everyone's review
Here are Lizzie's stats from her 12-month checkup Tuesday:
She is 19 lb, 11 oz (30th percentile); she is 29 and 1/4th in long (50th percentile); and her head circumference is 17 and 5/8th in around (45th percentile). She got two shots (which are hard on mommy). Her pediatrician says she's looking great!
Today Lizzie's therapist came to work with her, and the coordinator also came along to do the six-month review. Good news: Lizzie met all of her goals for the first six months that the therapist worked with her! They were all motor skills: sitting up, crawling, using the pincer grasp, pulling up to stand, etc. She does all of those things quite well. The goals that they wrote for Lizzie's next six months are language goals. They want her to be able to vocalize more sounds and request what she wants. They did say it's no big deal that she's not walking yet. If she reaches 18 months and is still not walking, then they'll start to worry.
Okay, so we've had the doctor's review and the therapist's review; now for the Mommy review of Lizzie:
I think she's doing really well too! Especially when you consider what they were telling us back in September, we are so thrilled with how much she's growing and developing. She had one small seizure that we know of in May, but not since then as far as we can tell. Her hair is finally getting longer, and she even has some curls in the back where it's longest. She has five teeth now and eats mostly table food. She gets a cup of yogurt every day with some of her medicine ground up into powder and mixed in, and we still feed that to her with a spoon, but she somehow manages to chew up everything else with her only five teeth. She's a good eater too; there's not much she won't eat with gusto. Most of the time when she "crawls" it's on her hands and feet with her rear up in the air, rather than the traditional hands-and-feet crawl. She pulls up on everything and cruises along the furniture, and she can push up to a standing position from sitting on the floor and stand unassisted. She is quick to smile and show off her dimples, and sometimes she makes a silly grin where she wrinkles up her nose and squints her eyes--it's impossible not to smile back at that one!
She is 19 lb, 11 oz (30th percentile); she is 29 and 1/4th in long (50th percentile); and her head circumference is 17 and 5/8th in around (45th percentile). She got two shots (which are hard on mommy). Her pediatrician says she's looking great!
Today Lizzie's therapist came to work with her, and the coordinator also came along to do the six-month review. Good news: Lizzie met all of her goals for the first six months that the therapist worked with her! They were all motor skills: sitting up, crawling, using the pincer grasp, pulling up to stand, etc. She does all of those things quite well. The goals that they wrote for Lizzie's next six months are language goals. They want her to be able to vocalize more sounds and request what she wants. They did say it's no big deal that she's not walking yet. If she reaches 18 months and is still not walking, then they'll start to worry.
Okay, so we've had the doctor's review and the therapist's review; now for the Mommy review of Lizzie:
I think she's doing really well too! Especially when you consider what they were telling us back in September, we are so thrilled with how much she's growing and developing. She had one small seizure that we know of in May, but not since then as far as we can tell. Her hair is finally getting longer, and she even has some curls in the back where it's longest. She has five teeth now and eats mostly table food. She gets a cup of yogurt every day with some of her medicine ground up into powder and mixed in, and we still feed that to her with a spoon, but she somehow manages to chew up everything else with her only five teeth. She's a good eater too; there's not much she won't eat with gusto. Most of the time when she "crawls" it's on her hands and feet with her rear up in the air, rather than the traditional hands-and-feet crawl. She pulls up on everything and cruises along the furniture, and she can push up to a standing position from sitting on the floor and stand unassisted. She is quick to smile and show off her dimples, and sometimes she makes a silly grin where she wrinkles up her nose and squints her eyes--it's impossible not to smile back at that one!
Sunday, May 27, 2012
Happy birthday, Lizzie!
Lizzie is one year old today!
A year ago we didn't know what challenges her first year of life would bring, but even if we had known, it wouldn't have changed our joy at meeting her. We love having Lizzie's sweet spirit in our midst. We are so pleased with her progress and feel very blessed to have so many supporters.
Happy birthday to our baby girl!
A year ago we didn't know what challenges her first year of life would bring, but even if we had known, it wouldn't have changed our joy at meeting her. We love having Lizzie's sweet spirit in our midst. We are so pleased with her progress and feel very blessed to have so many supporters.
Happy birthday to our baby girl!
Monday, May 14, 2012
Walking again
We will be walking in the St. Louis area Epilepsy Walk on Saturday, June 16th. If you are interested in walking with us or in donating to the Epilepsy Foundation, please click the link below for more information. Thank you for your support!
http://seizetheday.kintera.org/faf/donorReg/donorPledge.asp?ievent=475388&lis=1&kntae475388=8E5289F9E78C4171971C57DBF214C230&supId=354734720
http://seizetheday.kintera.org/faf/donorReg/donorPledge.asp?ievent=475388&lis=1&kntae475388=8E5289F9E78C4171971C57DBF214C230&supId=354734720
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