Wednesday, March 27, 2013
Down syndrome from the view of an 8 year old
Last night I was laying next to Travis before bed, and I shared with him that one of my graduate students has a sister with Down syndrome. He responded by saying, 'they could be friends.' I explained that her sister is an adult. He said, 'oh, I thought she was Kat's age.' Then he asked, 'how do people have babies with Down syndrome?' I replied, 'that is a something that scientists don't completely know the answer to.' But, I explained to him that he and I have 46 chromosomes and Kat has 47 chromosomes. He asked, 'what's a chromosome'...ok that's fair, he's only 8, but I forget that sometimes! I said a chromosome is a cell and that we get 23 from our mom and 23 from our dad. Then, in his infinite curiosity he asked, 'where does the extra one come from?' I replied, 'that is a GREAT question.' Again, I told him that scientists aren't entirely sure about that either, BUT they suspect it comes from the mom. His face lit up and he said, 'I was thinking the mom TOO!'
It's definitely a journey helping Travis understand what Down syndrome really means, and I know that will come in time. For now, he knows Kat is somehow different, and yet on the other hand, he knows that she's simply his sister. When we were dropping him off at school yesterday I was reminded of the uniqueness of their relationship as brother and sister. I opened the car door to help him get out and he was leaning over giving Kat a kiss on the forehead. Then he asked her to give him a kiss back ;-) All that really matters is that he loves her and honors her as an individual. I'm pretty sure that part is taken care of.
Thursday, March 21, 2013
World Down Syndrome day!
Wow...this post is long overDUE!! Life has been CRAZY busy...and somehow I have continued to work full-time, manage a private practice, coordinate all of Katarina's medical appointments, get Travis into glasses, braces and expanders, and help him manage the emotional and physical growing pains that go with being a 3rd grader. None of this would be possible without a husband who cooks, cleans, grocery shops and runs a successful business!!
The main reason I am posting today is because today is World Down syndrome day...a day I didn't know existed 5 years ago. The date 3/21 represents Down syndrome because there are 3 copies of the 21st chromosome in persons with DS. This means different things for different families, but ultimately being different is not a bad thing! For Kat it means lots of medical appointments and unique challenges with her health. We have numerous specialists involved in her medical care (i.e., pediatrician, ENT, an audiologist, endrocrinologist, Gastroenterologist, Allergist, opthamologist, physical therapist, and speech therapist). She recently endured a sleep study - connected to 27 wires and sensors and never shed a tear. She also completed a 'generation' test in order to determine her body's response to human growth hormone. She has probably given more blood than most young adults and bounces back in minutes when it's over.
She has Down syndrome, hypothyroidism, pancreatic insufficiency, a speech impairment, hearing impairment, visual impairment, and growth deficiency; but despite all of those challenges, she has one of the best attitudes of anyone I know!
She represents the true definition of resilience!!
Kat was never supposed to make it into the world - much less survive once she got here. Not only did she get here, she has made her presence known in a powerful way! I can't describe in words what she has done for our family. She makes us laugh - OFTEN! She shows us her love of music, does an impressive 'gangham-style' immitation, and knows what it means to 'share' her cheetos. She is mainstreamed into a 4-year old classroom and is holding her own. She wears glasses just like her big brother and wants to be like him when she grows up. She knows what she likes (and doesn't like) and will certainly let you know!
We think about the future often, but try to put most of our efforts into the present; which is all we really have. There are a few things that have been brought to our awareness since her birth. The word 'retarded' stings in a way that would not have before she was born. Being different means being noticed. And, we are the lucky ones!! We can imagine a future for her that involves a wonderful quality of life. Tonight the national news aired a story about a young man with DS who works in a family restaurant and is known for his hugs...36,000 of them. He has a sense of purpose and expresses his love to others daily! We don't know exactly what Kat's special purpose is, but we suspect it will be one filled with lots of love, determination and a pure soul that will be noticed by many.
Katarina went on a field trip today to her first concert, Steven Fite. He is a children's song writer, and the event couldn't have been more perfect on this special day; given her love of music. I received a picture from her teacher while they were at the concert and she was smiling ear to ear ;-). A reminder that she is truly happy to be in this world!
We were recently reminded of how others experience our family by a message we received from our sitter.
The message was as follows:
'You and Paul have such an incredible family! Watching those kids interact with one another and with me. Travis comforting Kat when she wanted you guys to come home, him brushing her teeth and then snuggling with her on your bed. It was the most amazing thing to watch. Thank you for giving me the opportunity to spend time with your precious kiddos! You both are the kind of parents I hope to be one day.'
I was deeply touched by those words and took a deep breath knowing we were doing something right! I ask that each of you take the opportunity to reach out to those who are different or chromosomally enhanced and let them show you a few simple things...love, laughter and light!!
Love to you all,
Nicole
Sunday, August 14, 2011
National Down Syndrome Congress Annual Convention
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'.
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, 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
Saturday, September 25, 2010
SIX month past due update!!
Hello Everyone - this is your long OVERDUE update;-p
This has been the craziest year of my life, I think! I have very little time to write which saddens me greatly. I will always have you all in my heart, but can't write much under the constraints of my current life!
Kat turned two in May and has stolen our hearts in the best way imaginable. Travis adores her and makes me/us so proud. He turned 6 in July and is going on 16 most days. He is very smart...made a '100' on his very first spelling test in 1st grade....makes a mama proud ;-) He has lost three teeth and grown even taller. He learned to swim this summer after Kat 'outdid him' in the bathtub one night;-)
The diagnostic health journey with Kat continues. For a quick review: we spent 6 weeks in houston in Feb/Mar in an effort to get a diagnosis for pancreatic insufficiency (PI). She has responded well from enzyme treatment and has gone from 14-1/2 lbs to right under 20lbs (~29.5 in)...praise God!! She is still so small for her age but completely perfect in every way. She has so much charm and personality.
She has been standing/holding onto furniture and is beginning to take steps with support. She recently was signing something we weren't familiar with, but once she said 'bir' we realized and looked it up in our 'sign' book. She was making the exact sign for 'bird'. She has rhythm that won't quit whenever she hears a beat! I told someone recently that I think she will end up in Hollywood at some point!!! I am SO BLESSED to have the most beautiful kids in the world and a dedicated husband.
Paul and I stay very busy with a two-career life. I am just returning from a professional conference where I presented the Down syndrome research I have been working on this past year with a colleague of mine; who also has a child with DS. We are analyzing the data of over 375 completed survey responses from other parents. We are planning to develop a brochure that all parents will be given when they receive a DS diagnosis. We also hope to begin offering training to medical residents on doctor-patient communication of poor pre-natal diagnosis (hate that term) b/c there is nothing 'poor' about Kat!
Our next step is to figure out what is going on with Kat's IGF-1 and hGH levels. She either has a deficiency of one or both and ultimately will probably receive a diagnosis of 'dwarfism'. She is truly one in a 6.8 BILLION girl!
I will do my best to update more often, but at least once we get her next testing done in October. I know many of you have prayed for us since the pregnancy with Kat. You can't fully know the great impact you have had on my faith!
Love and hugs to all,
Nicole
This has been the craziest year of my life, I think! I have very little time to write which saddens me greatly. I will always have you all in my heart, but can't write much under the constraints of my current life!
Kat turned two in May and has stolen our hearts in the best way imaginable. Travis adores her and makes me/us so proud. He turned 6 in July and is going on 16 most days. He is very smart...made a '100' on his very first spelling test in 1st grade....makes a mama proud ;-) He has lost three teeth and grown even taller. He learned to swim this summer after Kat 'outdid him' in the bathtub one night;-)
The diagnostic health journey with Kat continues. For a quick review: we spent 6 weeks in houston in Feb/Mar in an effort to get a diagnosis for pancreatic insufficiency (PI). She has responded well from enzyme treatment and has gone from 14-1/2 lbs to right under 20lbs (~29.5 in)...praise God!! She is still so small for her age but completely perfect in every way. She has so much charm and personality.
She has been standing/holding onto furniture and is beginning to take steps with support. She recently was signing something we weren't familiar with, but once she said 'bir' we realized and looked it up in our 'sign' book. She was making the exact sign for 'bird'. She has rhythm that won't quit whenever she hears a beat! I told someone recently that I think she will end up in Hollywood at some point!!! I am SO BLESSED to have the most beautiful kids in the world and a dedicated husband.
Paul and I stay very busy with a two-career life. I am just returning from a professional conference where I presented the Down syndrome research I have been working on this past year with a colleague of mine; who also has a child with DS. We are analyzing the data of over 375 completed survey responses from other parents. We are planning to develop a brochure that all parents will be given when they receive a DS diagnosis. We also hope to begin offering training to medical residents on doctor-patient communication of poor pre-natal diagnosis (hate that term) b/c there is nothing 'poor' about Kat!
Our next step is to figure out what is going on with Kat's IGF-1 and hGH levels. She either has a deficiency of one or both and ultimately will probably receive a diagnosis of 'dwarfism'. She is truly one in a 6.8 BILLION girl!
I will do my best to update more often, but at least once we get her next testing done in October. I know many of you have prayed for us since the pregnancy with Kat. You can't fully know the great impact you have had on my faith!
Love and hugs to all,
Nicole
Wednesday, April 7, 2010
Blown away by Kat's latest....
POTTY TRAINING!!! Kat just turned 22 months and recently was diagnosed with pancreatic insufficiency (PI). She started enzyme treatment less than a month ago and has solid 'poop' for the first time in her life! About 4 months ago I pulled out the training potty we saved from our son and sat her on it. She did NOT like it and clearly wasn't ready to even sit on it!! So, I put it away and let go of the idea of potty training any time soon.
However, the other night she appeared to need to 'poop' when she was taking a bath, so I pulled out the training potty and sat her on it and told her to 'push'. She did and I can say she has officially begun the process. Of course, it is easy to say 'that was great timing' on my part. But, we proceeded with lots of praise and a victory dance, and remained skeptical as to whether she was truly ready.
The next evening was an exact duplicate of the above scenario...bath, started to pass gas, pulled her out, put her on the potty and VIOLA!!! More celebration continued. Still wondering if this could be true....I started her bottle this morning, proceeded with getting myself dressed and then took her to change her overnight diaper. I paused and told her...'let's go potty'.
I sat her down and told her to 'push with your tummy'. Less than 5 minutes later, she pooped and peed and clapped for herself!!! NOTE: she had not shown any signs that she was about to poop beforehand!!
Could this really be the beginning of successful potty training at 22months???
The funniest thing about this is she is SO SMALL (est. 16+lbs/27in) from the malnutrition related to the PI, that her feet still don't touch the ground when sitting on the training potty and she is nowhere close to pulling up or walking. I continue to be amazed by her!!
She is NOT going to be happy with me, when she sees this as a teenager, but here's the proof!
Blessings,
Nicole
However, the other night she appeared to need to 'poop' when she was taking a bath, so I pulled out the training potty and sat her on it and told her to 'push'. She did and I can say she has officially begun the process. Of course, it is easy to say 'that was great timing' on my part. But, we proceeded with lots of praise and a victory dance, and remained skeptical as to whether she was truly ready.
The next evening was an exact duplicate of the above scenario...bath, started to pass gas, pulled her out, put her on the potty and VIOLA!!! More celebration continued. Still wondering if this could be true....I started her bottle this morning, proceeded with getting myself dressed and then took her to change her overnight diaper. I paused and told her...'let's go potty'.
I sat her down and told her to 'push with your tummy'. Less than 5 minutes later, she pooped and peed and clapped for herself!!! NOTE: she had not shown any signs that she was about to poop beforehand!!
Could this really be the beginning of successful potty training at 22months???
The funniest thing about this is she is SO SMALL (est. 16+lbs/27in) from the malnutrition related to the PI, that her feet still don't touch the ground when sitting on the training potty and she is nowhere close to pulling up or walking. I continue to be amazed by her!!
She is NOT going to be happy with me, when she sees this as a teenager, but here's the proof!
Blessings,
Nicole
Sunday, April 4, 2010
Happy Easter...what a perfect day!
There are more photos to come, but here are some from today! I hope everyone was blessed to join family and friends on this blessed day!
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