Hello Everyone:
I would have to start by saying 'Powerful'. I attended the NDSC annual convention in San Antonio last week. I was overcome with emotion as I entered the hotel lobby and everywhere I looked was a child, teen or adult with Down syndrome. I have never been surrounded by so many special faces in one place. And, I missed my family terribly! I knew it was a family-oriented event but because I was presenting one of the workshops, I had decided to travel alone...big regret! Next year the convention is in DC; which will make a long way to travel as a family.
I met many great people and heard so many touching stories while I was there. My colleague, Briana and I co-presented, "My Kid Has More Chromosomes Than Yours?": Positive parenting outcomes in raising a child with Down syndrome. We had about 70 people in the audience and they provided lots of positive feedback about our research. A few days after returning to work, we received an email from someone on the Scottish Council for Bioethics who wanted to cite our research stating that, 'although life with a special needs child is stressful, it is no less meaningful'. Our research definitely highlights that perspective from parents. We were amazed that this organization had found our research from outside the US. We are in the writing phase of our project and hope to get some articles out this fall and further develop the chapters of our book.
We ask for prayers of support and links to any possible publishing contacts you may have. Getting 'in' to a publisher is very difficult!! Briana and I will continue searching for the right publisher, but if we have to, we will self-publish. I told Briana...we are 'self-publish' kind of women any way ;-)
Hugs and love,
Nicole
P.S. If you want to support Down syndrome awareness, go to www.downsyndromefootprint.com
Their logo sports a footprint, but take notice of the gap between the big toe and second toe. That is one of the characteristics of Down syndrome. I like to call it the 'funky toe'.
Sunday, August 14, 2011
Sunday, July 3, 2011
Where to begin???
Hello Everyone:
I can't believe I haven't written anything for the past nine months! I will do my best to give a summary and important highlights of what I can remember ;-p So many great things have occurred for both Kat and Travis and for our family in general. I think the easiest way to update is in 'calendar' style.
October - Kat officially weighed in at 21lbs! We requested blood work to assess her Human Growth Hormone level; which resulted in scheduling a Growth Hormone Stimulation test. This month also represented another opportunity to pause and be greatful. One of my 'cyber' friends had to bury her daughter Renee, after complications from Cystic Fibrosis. This was particularly sad because her daugther also had Down syndrome. If you all remember, there was a point in time that we suspected Kat had cystic fibrosis due to her pancreatic/malabsorption problems. Thankfully, her test results came back negative. Unfortunately, for Renee's familly, their hearts are broken until they meet again!!
Happy Halloween...from Sumo Travis and Ballerina Katarina...
November - The 'stim' test was a success and the results came back normal. Kat had to endure an IV for about 3 hours without anything to eat or drink. We entertained with stickers, DVD's and bubbles. She was a trooper as always!
December - Given the craziness of the year, we opted for Christmas at home. I think we have started a new tradition. It was hard to be away from family, but definitely less stressful and less exhausting than travelling with two kids and gifts! Kat stood up on her own on New Year's Eve and began using her walker to get around the house!
January 2011 - Kat began wearing panties during the day! We expected the usual accidents but were greatful to approach this significant milestone... I also organized and hosted the Family Therapy Symposium at Texas Tech. I presented the results of the Down syndrome research I have been working on with my colleague Briana and some of my wonderful grad students. We presented results about the most positive and negative experiences of parents of children with DS as well as 'advice to parents by parents'. The day was very touching. We even had a young woman in the audience, named Jordan, who shared about her own life as a person with DS. I don't think there was a dry eye in the house as she thanked the audience for 'their service'!
February - I'm sure something meaningful happened but who can remember that far back in time???
March - A year ago this month, we returned home from Houston after 6 weeks of medical appointments and diagnostic surgery. Kat has continued to demonstrate her amazing spirit of 'determination'. She can bear crawl like no other and is standing more and more each day.
April - We have been working steadily on increasing Kat's spoken words. She has done fantastic with sign language, and we know she will speak fully in the near future. She says regularly, 'what is that?' and 'who is that?'. We have counted up about 50 signs and about 25 words. We are truly amazed by her progress.
Thanks to our great friends who offerred their condo to us, we had a wonderful Easter in Angel Fire, New Mexico. We were blessed by snow the morning we departed back to Texas!
May - Travis completed 1st grade with all A's...we are so PROUD! Katarina turned 3 and is WALKING!! We completed Early Intervention Services and said goodbye to Kat's team. It was bitter-sweet...on one hand we celbrated all the accomplishments over the past year, and on the other hand had to say 'goodbye' to a wonderful group of people who we will never forget!
June - Summer is finally here, but with teaching summer school, it didn't feel any less stressful than a regular semester. Thankfully, I have survived and now get to breathe a bit. Kat had a check up with her pediatrician weighing in at 25lbs and measuring 31 inches. Still small but mighty!
July - Travis turned 7!!! He makes us so proud with who he is becoming...a young man. It is difficult to imagine that he will be graduating from high school in 10 years and yet I realize it too will happen in a flash.
I hope you all are finding ways to stay cool in this summer heat. We are officially in a drought with little relief in sight. We plan as many visits to the pool as possible.
Hugs and love to all,
Nicole
I can't believe I haven't written anything for the past nine months! I will do my best to give a summary and important highlights of what I can remember ;-p So many great things have occurred for both Kat and Travis and for our family in general. I think the easiest way to update is in 'calendar' style.
October - Kat officially weighed in at 21lbs! We requested blood work to assess her Human Growth Hormone level; which resulted in scheduling a Growth Hormone Stimulation test. This month also represented another opportunity to pause and be greatful. One of my 'cyber' friends had to bury her daughter Renee, after complications from Cystic Fibrosis. This was particularly sad because her daugther also had Down syndrome. If you all remember, there was a point in time that we suspected Kat had cystic fibrosis due to her pancreatic/malabsorption problems. Thankfully, her test results came back negative. Unfortunately, for Renee's familly, their hearts are broken until they meet again!!
Happy Halloween...from Sumo Travis and Ballerina Katarina...
November - The 'stim' test was a success and the results came back normal. Kat had to endure an IV for about 3 hours without anything to eat or drink. We entertained with stickers, DVD's and bubbles. She was a trooper as always!
December - Given the craziness of the year, we opted for Christmas at home. I think we have started a new tradition. It was hard to be away from family, but definitely less stressful and less exhausting than travelling with two kids and gifts! Kat stood up on her own on New Year's Eve and began using her walker to get around the house!
January 2011 - Kat began wearing panties during the day! We expected the usual accidents but were greatful to approach this significant milestone... I also organized and hosted the Family Therapy Symposium at Texas Tech. I presented the results of the Down syndrome research I have been working on with my colleague Briana and some of my wonderful grad students. We presented results about the most positive and negative experiences of parents of children with DS as well as 'advice to parents by parents'. The day was very touching. We even had a young woman in the audience, named Jordan, who shared about her own life as a person with DS. I don't think there was a dry eye in the house as she thanked the audience for 'their service'!
February - I'm sure something meaningful happened but who can remember that far back in time???
March - A year ago this month, we returned home from Houston after 6 weeks of medical appointments and diagnostic surgery. Kat has continued to demonstrate her amazing spirit of 'determination'. She can bear crawl like no other and is standing more and more each day.
April - We have been working steadily on increasing Kat's spoken words. She has done fantastic with sign language, and we know she will speak fully in the near future. She says regularly, 'what is that?' and 'who is that?'. We have counted up about 50 signs and about 25 words. We are truly amazed by her progress.
Thanks to our great friends who offerred their condo to us, we had a wonderful Easter in Angel Fire, New Mexico. We were blessed by snow the morning we departed back to Texas!
May - Travis completed 1st grade with all A's...we are so PROUD! Katarina turned 3 and is WALKING!! We completed Early Intervention Services and said goodbye to Kat's team. It was bitter-sweet...on one hand we celbrated all the accomplishments over the past year, and on the other hand had to say 'goodbye' to a wonderful group of people who we will never forget!
June - Summer is finally here, but with teaching summer school, it didn't feel any less stressful than a regular semester. Thankfully, I have survived and now get to breathe a bit. Kat had a check up with her pediatrician weighing in at 25lbs and measuring 31 inches. Still small but mighty!
July - Travis turned 7!!! He makes us so proud with who he is becoming...a young man. It is difficult to imagine that he will be graduating from high school in 10 years and yet I realize it too will happen in a flash.
I hope you all are finding ways to stay cool in this summer heat. We are officially in a drought with little relief in sight. We plan as many visits to the pool as possible.
Hugs and love to all,
Nicole
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