Thursday, April 10, 2008
Rylie's Modeling Gig
Rylie had a modeling gig for ALL STAR LABOR CLASSIC back in December. Click here to check it out.
Wednesday, April 9, 2008
Monday, April 7, 2008
Random Stuff
Rylie isn't crazy about keeping her glasses on, but the good thing is that when she takes them off, she hands them to me gently. She isn't ripping them off her face and tossing them across the room as I expected. I feel bad though, because I know she can see so much better with them on(obviously, that's why she has them).
She will keep them on if she is looking at a book or enjoying something on T.V. This is really going to take a lot of patience and perseverance on my part, which by the way I have plenty of right now even though Cesalie keeps me up all night. She is just not a sleepy baby. She can sometimes go a whole day without a nap. I never heard of a 9 month old not needing a nap. She has a little bit of a cough, so if she coughs during the night,she wakes up and stays up. We are still playing musical beds with her too.
I know the best thing would be to put Rylie in a room with Karlie, so Cesalie stops waking her up, but Karlie has so much stuff in her room that Rylie could get into, and that would not be good. So when Cesalie wakes up in the middle of the night , we quickly take her back to our room, so she doesn't wake up Rylie. Good grief!
Saturday, April 5, 2008
Cesalie at 9 months old
There are so many things going on around here, but I'm feeling to lazy and tired to post about them, so I will just let you enjoy some pictures of Cesalie. Hope you can stand all this cuteness!
Wednesday, April 2, 2008
Trisomy 21 Symposium
We are so fortunate to live near CHOP where they will be holding the annual Trisomy 21 symposium on April 12th. We will be going as long as we find a babysitter-hint hint, anyone??
Anyway here's whats in store. If I am reading this right it looks like Karen Gaffney will be speaking. I would just love to meet her!
7:50 a.m. Welcome and Introduction
8 a.m. Education and Inclusion: Karen Gaffney
From the moment she was born, Karen Gaffney began an incredible journey
that continues today. She is the President of a non-profit organization dedicated to championing the journey to full inclusion in families, schools, the workplace and the community for people with developmental disabilities. She is doing this by creating awareness and calling attention to the tremendous capabilities of people with disabilities.
9 a.m. Behave Yourself: Transforming Lives through Positive Behavior Support
Mark J. Bernstein, M.A.
This interactive presentation will focus on the concept of positive approaches and the technique of positive behavior support as models for supporting and encouraging individuals to live the best life possible.
10 a.m. Break
10:30 a.m. Speech and Language Therapy, Beyond Articulation: Barbara M. Jordan, MA, CCC-SLP
This presentation will describe the range of language services children with Down syndrome need, and ideas to support their language at home and school.
11:15 a.m. Healthy Behaviors for Weight Management: Rebecca Thomas, R.D., LDN
Review strategies to help families adopt a healthier lifestyle through diet and physical activity.
Noon Panel Discussion/Q & A
12:30 p.m. Lunch and Exhibits
1:30 p.m. Breakout Session I
A. Sexuality and Adolescence: Lisa Tuchman, M.D., MPH
Focus on puberty, approaching healthy sexuality, intimacy and romantic relationships in individuals with Trisomy 21.
B. New and Expecting Parents: Mary Pipan, M.D. & Dorothy Brightcliffe, R.N.
This workshop will discuss how that challenge can be rewarding, despite the obstacles that will arise. It will stress the importance of putting the child before the Down syndrome, and raising your child, your extended family and members of your community to do the same.
C. The Friends First Network: Karen Gaffney
The Friends First Network* has been designed to help bridge the gap between students with disabilities and those with out by providing a social structure for students to become friends and the opportunity to work collaboratively on a service project. Have the opportunity to talk with Karen about the importance of inclusion and learn how to get Friends First started in your area!
D. Research in Trisomy 21: David Lynch, M.D., Ph.D.
Review of clinical issues in patients with Trisomy 21 and the issues in potential clinical trials.
2:30 p.m. Break and Exhibits
3 p.m. Breakout Session II
A. Attention Span Issues and Trisomy 21: Hillary Kruger, M.D., Mariko Nakanishi, M.D.
Discuss current Neurobiologic understanding of ADHD. Review of common associated features such as anxiety and learning disabilities. Discuss both medical and non-medical treatment strategies.
B. Dual Diagnosis: Mary Pipan, M.D.
This workshop will address social skills and emotional regulation, development in children with Down syndrome, as well as the behavioral and educational implications of a formal autism diagnosis.
C. Taking Care of our Bodies: Resources for Individuals with Down Syndrome and Those Who Love Us, Bernadette C. Wheeler, M.D.
Key topics will include teaching about privacy, physical changes of puberty, social and emotional development of adolescence, caring for your body, contraception and preventing exploitation. The talk will also discuss healthy relationships and dating.
D. Advancing Feeding Skills in Children with Trisomy 21
Susan M. McCormack, M.A., CCC/S, Sharon M. Greis, M.A., CCC/S
This session will provide information on normal progression of feeding skills, factors that impact this progression in the Trisomy 21 population as well as offer recommendations and practical strategies to maximize feeding skill development.
4 p.m. Adjourn
Anyway here's whats in store. If I am reading this right it looks like Karen Gaffney will be speaking. I would just love to meet her!
7:50 a.m. Welcome and Introduction
8 a.m. Education and Inclusion: Karen Gaffney
From the moment she was born, Karen Gaffney began an incredible journey
that continues today. She is the President of a non-profit organization dedicated to championing the journey to full inclusion in families, schools, the workplace and the community for people with developmental disabilities. She is doing this by creating awareness and calling attention to the tremendous capabilities of people with disabilities.
9 a.m. Behave Yourself: Transforming Lives through Positive Behavior Support
Mark J. Bernstein, M.A.
This interactive presentation will focus on the concept of positive approaches and the technique of positive behavior support as models for supporting and encouraging individuals to live the best life possible.
10 a.m. Break
10:30 a.m. Speech and Language Therapy, Beyond Articulation: Barbara M. Jordan, MA, CCC-SLP
This presentation will describe the range of language services children with Down syndrome need, and ideas to support their language at home and school.
11:15 a.m. Healthy Behaviors for Weight Management: Rebecca Thomas, R.D., LDN
Review strategies to help families adopt a healthier lifestyle through diet and physical activity.
Noon Panel Discussion/Q & A
12:30 p.m. Lunch and Exhibits
1:30 p.m. Breakout Session I
A. Sexuality and Adolescence: Lisa Tuchman, M.D., MPH
Focus on puberty, approaching healthy sexuality, intimacy and romantic relationships in individuals with Trisomy 21.
B. New and Expecting Parents: Mary Pipan, M.D. & Dorothy Brightcliffe, R.N.
This workshop will discuss how that challenge can be rewarding, despite the obstacles that will arise. It will stress the importance of putting the child before the Down syndrome, and raising your child, your extended family and members of your community to do the same.
C. The Friends First Network: Karen Gaffney
The Friends First Network* has been designed to help bridge the gap between students with disabilities and those with out by providing a social structure for students to become friends and the opportunity to work collaboratively on a service project. Have the opportunity to talk with Karen about the importance of inclusion and learn how to get Friends First started in your area!
D. Research in Trisomy 21: David Lynch, M.D., Ph.D.
Review of clinical issues in patients with Trisomy 21 and the issues in potential clinical trials.
2:30 p.m. Break and Exhibits
3 p.m. Breakout Session II
A. Attention Span Issues and Trisomy 21: Hillary Kruger, M.D., Mariko Nakanishi, M.D.
Discuss current Neurobiologic understanding of ADHD. Review of common associated features such as anxiety and learning disabilities. Discuss both medical and non-medical treatment strategies.
B. Dual Diagnosis: Mary Pipan, M.D.
This workshop will address social skills and emotional regulation, development in children with Down syndrome, as well as the behavioral and educational implications of a formal autism diagnosis.
C. Taking Care of our Bodies: Resources for Individuals with Down Syndrome and Those Who Love Us, Bernadette C. Wheeler, M.D.
Key topics will include teaching about privacy, physical changes of puberty, social and emotional development of adolescence, caring for your body, contraception and preventing exploitation. The talk will also discuss healthy relationships and dating.
D. Advancing Feeding Skills in Children with Trisomy 21
Susan M. McCormack, M.A., CCC/S, Sharon M. Greis, M.A., CCC/S
This session will provide information on normal progression of feeding skills, factors that impact this progression in the Trisomy 21 population as well as offer recommendations and practical strategies to maximize feeding skill development.
4 p.m. Adjourn
Tuesday, April 1, 2008
Rylie-If you keep your glasses on then you can have some ice cream
Nope, she's not having it. She keeps them on for about 10 seconds before she takes them off. I wish she would at least take them off gently, but NO! I have a feeling Wordless Wednesday might just include a picture of broken glasses.
They really are a nice pair of glasses. I think she looks pretty darn cute!
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