WELCOME TO NATHAN'S BLOG!
Thank you for keeping up-to-date with Nathan. We hope you visit often and enjoy experiencing our son's journey as much as we do. Please feel free to leave comments.
We love hearing from everyone!!!!
Wednesday, December 31, 2008
Christmas is a time of year where I try to purchase thoughtful and memorable gifts - I love the overwhelmed with emotion response! I really do enjoy finding gifts that our family loves or will one day. This year, I purchased Nathan and his newest cousin their very first Christopher Radko ornaments. These are my favorite Christmas tree ornaments and I cherish each one that I've been given for special occasions. These ornaments are collectors items and simply beautiful. You can read about them and view the collection here -Christopher Radko
Under normal circumstances Nathan would never touch this ornament but I wanted you all to see it. We also had the ornaments personalized by a professional calligrapher.
Saturday, December 27, 2008
On the celebration of His birthday, I am thankful for my gift from God.
Monday, December 22, 2008
For obvious reasons, the only time Nathan is allowed to sport his birthday suit is at bath time. We have a normal routine - get undressed, remove his diaper and walk to the tub in full nakedness. He loves it! He's so proud of himself! It's very cute. However, the past few times once we've gotten to the bathroom he just sits down on the floor. Yesterday, as we stepped onto the floor he stopped and as I waited for him to sit down he decided to pee all over the floor! haha I was totally cracking up! If this is the beginning of toilet training, Nathan's not doing so bad, at least he was in the bathroom!
Saturday, December 20, 2008
Remember how easy it was for Nathan to slip out of his stroller at Sears? Yeah, well it's not so easy to slip out of his crib - as he discovered today.
These snow suits are amazing! Really warm, totally comfortable and come with a built in wig! I used to work with a guy that had a rug just like this one!
Wednesday, December 17, 2008
The doctor was wonderful from the moment we met him and Nathan performed like it was his job! Nathan did so well that the specialist said, "Nathan has made my day!" He also said that Nathan is doing exceptional and WE DON'T EVER HAVE TO GO BACK!!!! Unless we want to.
Each of Nathan's therapists were stunned - two of them even cried! They've never heard this doctor ever say that before!! Our little man is just awesome! But, you knew that.
Last week, I took Nathan to see a pediatric dentist about the palette expander and basic dental appointment. I will never take Nathan back to that doctor again. Was he nice? yep. Did he seem knowledgeable about Down syndrome and Nathan's future dental needs? yep. Everything about him was just splendid - except the moment I laid eyes on him and he began to speak and talk to Nathan I got totally creeped out. I can't explain it - six sense. Something freaked me out about that dentist and I know when to trust my gut.
With that said, the palette expander wouldn't be placed on Nathan's teeth until he was about 5 years old and after speaking to his speech therapist, it's unnecessary anyway. She and I spent a good deal of time discussing just how we form sounds and words - the part of the tongue, jaw and mouth used in verbal communication. None of which would benefit from a palette expander. It was a nice try though.
Lastly, Nathan is in his own bedroom for the first since he was born. We'll see how this shakes out - for both of us. I'll let you know.
Tuesday, December 16, 2008
Nathan had O.T. this am and then we headed off to watch his cousin Emily ice skate at school! I'm just amazed at the caliber of that school - they do ice skating, private piano lessons, and dance class in addition to normal instruction. I have a few pictures from this morning. Later this evening, I'll be posting on his developmental specialist appointment and his dentist appointment. Until then..enjoy the rest of your day.
Sunday, December 14, 2008
(Simply click on the title of this post and you'll be rerouted to the photos.)
Saturday, December 13, 2008
It all started with the dog - he began to bark and become unsettled. Then the house alarm began to chirp and that's when the first fire ball explosion happened! Right outside our bedroom window.
One of our trees had so much ice on it that it leaned on the high voltage lines, which caused them to begin exploding. And, I'm not exaggerating when I say explosions - it was terrifying! My husband is a Master Electrician and he's never seen anything like it!
Of course the first thing I did was grab the baby (who is still in our room) and head down stairs - away from the poll. My husband picked up the phone to call 911 and guess what happened?
NO ONE ANSWERED!!!!!!!!!!!!!!!! Can you believe it?
Now, the baby is awake, the dog is shaking with fear and we're afraid our house is going to catch fire and we can't get 911 on the phone! So, we call the police. Where the irritated dispatcher tells my husband - "sir, it's just a transformer." Then, hangs up. Nice. Now, remember there is NO transformer on this poll - we were dealing with high voltage lines.
Danny then tries to call our local power company - no way we were getting through. This sucked.
After about an hour it seemed to calm down - what a relief. We saw sparks but the explosions had stopped. So, we decided to try and rest. Yeah right. Right up until the minute the fire explosions started again! Now, we were back to square one. We camped out in the furthest point in the house - watching the poll and simply praying our house wouldn't catch fire.
I'm happy to report - we were spared. If a sleepless night is all that we had to endure - I'll take it. We've caught up on our sleep and are doing just fine. Not everyone in our area has fared so well. All of our family is still without power and it's freezing here. Thank God for generators.
Wednesday, December 10, 2008
Tuesday, December 9, 2008
Lesson learned - but I'm still laughing about it!
Monday, December 8, 2008
Tuesday, December 2, 2008
One thing I've come to realize in the past 11 months is that - you never really know how quickly life goes until you watch your child grow. I know this many sound strange but I feel luck that Nathan's slightly delayed in his development - to me, I get my baby just a little while longer than most.
Monday, December 1, 2008
Now, you all know Nathan loves his Baby Einstein videos and this was the first time he was able to watch it on our television! And, it was the last time too!
Thirty minutes after the movie ended the television broke!!! hahahaha I laugh because Danny really wanted to buy a new television and I didn't. I guess he won this one. When I called him and broke the news he said "I didn't do it! I swear!"
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Thursday, November 27, 2008
Each year, my Aunt gathers our family’s blessings and places them in a scrap book. This year I’d like to share our blessing with you.
I am thankful for Down syndrome. This year, my husband and I learned that some of life’s greatest blessings don’t come wrapped in the nice pretty packages that we hoped they would. Our package was lined with gold. So often a blessing is what we make it. Like Nathan. I can choose to see his syndrome as a blessing or a hindrance. It’s a blessing. His smile, little giggle, and sweet personality light up my days and I couldn’t imaging life any other way.
I am thankful to God because Nathan will be able to talk with us, he’ll run around, play sports, go to school and college, he’ll hold a job, and live a full life. It could have been different.
I am also thankful that our family has been blessed with opportunities that give me the ability to stay home with Nathan.
Happy Thanksgiving. May your day be filled with the reflection and realization of the many blessings you have in your life – big and small.
Tuesday, November 25, 2008
For the past twelve years I’ve had the privilege to work for and with some of the most remarkable people. Few can actually say that they have a deep respect and admiration for those that they've worked under but I can. These men (yes all men) have been great influences on the person and professional I’ve become. At times, they saw potential in me that I didn’t know existed and it inspired me. For that I am forever grateful.
For twelve years, I’ve had the great honor and privilege to do a job that only a few will have the opportunity to perform. Very few professions afford you the opportunity and platform to see injustice in the world and change it. I was afforded that opportunity and I will cherish it.
I gave my notice today at the Senate.
In so many ways I feel like I’m morning the loss of a loved one and in some ways I am. The Senate is a part of me – so I’m morning the loss of myself. And although, I've made this decision for all the right reasons it was still difficult. Nathan needs his mother and I wouldn't have it any other way.
I have been blessed beyond measure for the past 12 years and look forward to the days ahead with my son. God may have closed this door but he opened another. That’s another post for another time.
Monday, November 24, 2008
I ended the video with a little victory dance - Nathan style!!!
On another note, I was able to get real video of our little inch worm!!! It's so darn cute. I don't know how he manged to learn to get around this way but I don't care! He is and that's all that matters.
Saturday, November 22, 2008
Today, Nathan and I went to the Capital Region Food Bank to deliver our Thanksgiving food donations that we collected at our annual Friends Night gathering. Thank you to all those that brought donations and took part in "giving back" this holiday season.
I'd be remiss, if I didn't mention my friend CJ, who came to the party carrying a huge bag of stuffing and as she walked through the door said: "this has got to be the strangest thing I've ever been asked to bring to a party!" :-)
Thursday, November 20, 2008
Wednesday, November 19, 2008
I can't believe it! I had him on the kitchen floor and I laid down in front of him and began tapping my nails on the floor. If you know Nathan well, you know he is absolutely fascinated with hands.
Next, I put both of my hands under his armpits and pulled him forward - showing him he can move forward and then I began tapping the floor again. This time he actually moved forward!!! And, he kept doing it!!!!! I was freaking out!
I called my sister totally crying and asked her to come over and video tape it because I couldn't tap and tape. When she got here, Nathan decided he had done enough! Figures!
I'll try again later. Stay tuned - you may see video proof soon!!!
On a side note, his physical therapist predicted he would be crawling by 10. 5 months and she wasn't too far off. In fact, she was only three days off!!!
As another aside, had I been at work today this wouldn't have happened. thank God for vacation time!
Monday, November 17, 2008
Every toy I looked at was evaluated on what the child's going to learn and then is that educational lesson what's important for that age group. Once I found some toys that met that criteria I began evaluating them by their "fun factor." For example, Nathan's therapist thought a good toy for Nathan would be one that helps him walk and specifically picked out a good example. When I looked at that toy and the others just like it I found another that was way more fun - it had lots more bells and whistles. The car only had a horn and fake knobs that did nothing - how fun is that?
Is this normal? Is every decision this calculated when it comes to children?
Sunday, November 16, 2008
Saturday, November 15, 2008
Day care - my son is such a good natured little boy - my fear is he'd be put in a toy or simply not given any attention. Who would help him ever day with the therapy that he needs? Who's going to teach him how to crawl, help him with his sign language and speech needs, and teach him how to use his pincher grasp to eat? Those workers making $8 an hour that have to deal with other crying children? I don't think so. Not to mention, the germs that lurk in these settings and Nathan needs to be as healthy as he can be.
Home Care licensed day care - This could be a potential option but my greatest fear is the lack of accountability. At least in a public day care - there are two adults in the room. I am fearful that without this check things could be potentially harmful for Nathan. And, some of my above fears also exist with private day care.
Mommy stays home - this is obviously the best option for Nathan. Daddy disagrees.
I feel that placing Nathan in a strangers care makes me a bad mother with mixed up priorities. Danny disagrees - he said to me "do you think every mother that makes the decision to put their child in day care is a bad mother?" The answer is no. But, not every mother is the mother of a child with Down syndrome. Not every mother has to worry about therapy, doctor's appointments, developmental delays and compromised immune systems. And, if they do - I still need to make the decision that is right for me - this is a personal decision.
We have one other option but it all depends on circumstances that may or may not arise. Either way it won't solve my current dilemma. With all of this said, I've full faith that things will be as they should. It's just going to be a little stressful until then.
Thursday, November 13, 2008
Wednesday, November 12, 2008
On December 8th, Nathan will have his first consultation with a pediatric dentist and the topic of conversation will be a palette expander. I've recently been made aware of the fact that such a device exists by a friend who spent 11 years employed by one. I'm curious to learn if it can help Nathan before he really begins communicating verbally! The device literally pushes the palette out - thereby, decreasing the arch and narrowness of his mouth. I'll keep you posted on the outcome.
Tuesday, November 11, 2008
A few years back I decided to see what I could find out about Nathan's great grandfather's service during WWII. Here was the email I sent to the NYS Director of Veterans Affairs -"Is there anyway for you to find out what unit my grandfather served in when he was in the Navy? His name is Peter John Corey he would have been from Troy, New York and it would have been during the 1930's or 1940's. He was very young. Joined when he was 14 because he lied about his age on his application. When they found out - they kicked him out! I actually think he was out to sea before they figured it out. Sent him home and he rejoined when he turned of age."
Here is the response I received "Your grandfather was born on 5 October 1929, and his Service Number was 6019926. He was issued a WWII Bonus check for $250 in January of 1948 and it was sent to 725 4th Avenue in Troy. He had a claim file with VA which was destroyed following his death. His death benefits claim was sent to the archives at Clark Summit, PA. We have requested the folder be sent to our office, but that will take about ten days. The folder may have enough in it to give you the information you are looking for, but if not we will have to go to the National Personnel Records Center in St. Louis and that will take weeks. Sorry I can't tell you more on this short notice, but this is what we have. I'll let you know when the folder arrives."
I'm still waiting.
If you see a Veteran - thank them. Not just today but any day. These men and women are proud to have served their country - be proud of them too by showing a little appreciation for their sacrifice.
Thursday, November 6, 2008
Monday, November 3, 2008
Since this time, I've made it a point to give baby sign language books to just about every one expecting a baby. It makes complete sense to me that if your child knows some simple basic signs he/she will be able to tell you what they need or want long before verbal language skills develop and this in turn can save the child from lots of frustration. I have been signing to Nathan since he was 6 months old and lately I've really kicked it up and am helping Nathan do the signs because we've noticed he is using frustration as a mode of communication - something I've been trying to avoid. This brings me to the reason for this post.
Nathan's speech therapist will be teaching (those who would like to join us) a basic sign language class on Monday November 10th at 6:00PM at our house (she will also bring handouts to take home for practice). I'd like to ask any of you that care for Nathan on an occasional basis to please attend. Nathan may not be speaking coherently for quite some time - thus, the use of sign language is going to be very important and I'd appreciate it if we were all on the same page. Please send me an email and let me know you'll be attending.
Sunday, November 2, 2008
Thursday, October 30, 2008
Wednesday, October 29, 2008
First, let me give you a little background - most persons who have had to deal with the medical community regarding Ds have commented on how out of touch the doctors are and how out dated information about Ds is.
What the bill basically does (among other provisions) is authorize the dissemination of up-to-date and accurate information "on the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes" when a women receives a positive prenatal or postnatal diagnosis for Ds of their child.
When this bill passed the Ds advocates stood up and cheered- rightly so. The press releases were flying and victory was being claimed.
As most of you know, I've worked in government my entire career and policy is one of my specialties (and why I love my job). So, I decided to actually read the bill to see just what the language said. As I suspected, there is NO requirement to do anything. Period.
The policy specifically says that the agencies "may authorize and oversee certain activities"...including"`(v) the establishment of awareness and education programs for health care providers who provide, interpret, or inform parents of the results of prenatal tests for Down syndrome or other prenatally or postnatally diagnosed conditions, to patients..."
Don't you just love government? In policy, one word can make all the difference - that word in this bill is "may." The bill doesn't say that the agency "must" or that the agency "is directed to" - it simply says it "may" do what the Congress has legislated.
Does this mean that it won't happen? No. Does this make the bill any less important? Not at all. This measure is a very important step forward for those persons who's lives are touch by Ds and those yet to come.
What it can mean is that those same organizations that worked so hard to see this policy come to fruition may need to take their battle into those agencies "authorized" to carry it out and make sure it gets done.
Tuesday, October 28, 2008
Here's what I mean - I've heard that most people with Down syndrome live at home. Will Nathan live at home his entire life?
ANSWER - Maybe. Most persons with Ds do live at home with their parents but many also live independently. I'm sure by the time Nathan becomes an adult the trend will shift toward greater independent living arrangements.
But, let me ask you this - are you a parent? Then, your child may just live at home their entire life too. I'm sure we all know typical adults that still live at home - I personally know several. My sister jokes that my niece is going to have it so good at home she'll never want to leave! Point is - Nathan will be no different than any other adult. If he chooses to live with us for his entire life we would be thrilled. I'd actually prefer it. But, that's his decision when the time is right. Until that day, Danny and I will prepare as if Nathan will be with us.
Do you have any questions? Send me an email.
Monday, October 27, 2008
On Saturday, Nathan spent the day with his dad and Grammy (mommy was working out of town). On Sunday, we attended my cousin John and Michelle's sons Baby Dedication ceremony - where we pleasantly found out there will be another new addition to the family!!!
Sunday, October 26, 2008
My hypothesis is two-fold -- the historically inaccurate and undeserving stigma attached to those with Down syndrome and our insatiable appetite for perfection in every aspect of our lives is to blame. Abortion is just the means to an end.
My husband and I chose not to have the prenatal amniocentesis, a procedure used to accurately detect chromosomal abnormalities and gender. We accepted our child from the moment of conception. But, are other women who make a different choice discriminating against the disabled or just exercising their right to choose? That's for you to decide. Regardless of the answer, the latest research is promising and has the potential to change the face of Down syndrome.
A team of Harvard University scientists have created a new technique that generates “pluripotent cells” - the procedure utilizes stem cells from the skin and bone marrow and turns them into stem cells (pluripotent cells until now were only found in embryos) in an attempt to reprogram the cells to act like embryonic cells, which will allow doctors to find new treatments and slow the progression of the 10 incurable medical conditions including Down syndrome.
The scientists aren’t claiming that creation of these cells is to genetically correct them and then reintroduce them to the body but they’re also not denying that one day that’s where the research is heading. Mick Bhatia of the McMaster Stem Cell and Cancer Research Institute in Hamilton, Ontario said, “the beauty would be that you’re taking the persons own cell, so if you correct it at a genetic level, by putting it back in, those cells won’t be rejected.”
As a mother of a son with Ds – I’m looking forward to the potential this research and others happening around the world will bring. But, that’s another post - for another day.
In so many ways, the struggles with Down syndrome are like other medical battles – fought with an outward smile and an inner strength many can’t comprehend. There is also an inner turmoil that silently drives you to learn everything. For me, it’s an unrelenting pursuit of knowledge that knows no boundaries when it comes to my son.
Tomorrow -- The Kennedy/Brownback bill - the turning point for Down syndrome and the medical community.
Saturday, October 25, 2008
The abortion of a fetus due to “serious physical or mental defects” is prohibited under Spanish statute, but a recent report found that even with these laws, 94.5% of such pregnancies are terminated. The birth of children with Down syndrome in Spain over the past fifteen years has been cut in half from 1 in 600 live births to 1 in 1,000. Has the Spaniard’s insatiable quest for perfection contributed to the increased incidence of abortion of the disabled?
Is it logical to consider such actions discrimination of disabled persons and therefore a criminal offense, or is it simply a woman’s right over her body? This report set off a fury within the Catholic Church and given an age old debate new significance.
Director Miguel Cruz of the Fudacion Vida in Spain called this “a silent and dramatic paradox” and he surmises that persons with Down syndrome are in danger of extinction. Spain is not alone.
Women around the globe are choosing to terminate their pregnancies once prenatal tests reveal a child has Down syndrome. In the United States, the Down syndrome termination rate is 92% - 1 in 733 children are born with the syndrome. Similar statistics are reported for France, Canada, and England.
Although, Down syndrome is the most common chromosomal anomaly, the high incidence of abortion in western countries is startling and disturbing. The facts show, that most children born with Down syndrome are born to parents who received the diagnosis postnatal.
What is it about children with special needs that’s so awful or scary that women are opting for such dramatic measures?
Find out tomorrow...
Friday, October 24, 2008
Down syndrome causes developmental delays and intellectual disabilities in all children - both can range from mild to moderate. Developmental delays are caused because children with Ds are born with some level of low muscle tone. I'll never forget when Nathan was born and my friend Keith came to see us in the hospital - he said "of course Nathan has low muscle tone -he's Danny's son!" hahaha I still laugh about it.
When Nathan's O.T. came on board a few months ago she was surprised and impressed with Nathan's progress because she said it takes a child with low muscle tone 8 to 10 times the effort to do anything a typical child does. That means when Nathan sits up on his own, walks, crawls or picks up a toy - it literally takes him 10x's the effort. You'd never know it - he's so amazing.
The low muscle tone also explains why Nathan can't keep his mouth closed all the time and why persons with Ds can have a protruding tongue. We are really working at trying to help him with this. He's a baby now so not many people notice it but when he's older it could be very noticeable. I don't want that for Nathan - so we work on it constantly. And, it is correctable.
The bottom line is - Nathan will develop just like any other child. He will walk, talk, run around and crawl! Just at his own pace. Will Nathan be crawling by 10 or 11 months? Maybe -maybe not. It doesn't matter. As an aside, Nathan is strong enough to crawl and he's doing really well working on his balance for walking - he just hasn't made the connection yet.
His speech therapist shared that children with Ds tend to reach their early milestones at the same pace as typically developing children until they reach about a year old. Then the difference becomes more apparent.
Most people think, as do we, that Nathan falls on the milder side of the spectrum regarding his low muscle tone and his intellectual disabilities. As Nathan's speech therapist says - you just won't know until you get there. We have no idea what Nathan's abilities will be but we do know that he will have a loving supportive team. We'll help him to learn on his terms.
I'm going to end this post by telling you that most of what Nathan has accomplished and what he will accomplish in the future is in large part to the Early Intervention specialists that work with him week after week. We owe a great debt of gratitude to the federal government for instituting this program and the wonderful therapists that dedicate their lives to our children's well being. Thank you - we are forever indebted to you.
Thursday, October 23, 2008
The end of the article is my favorite - the author, Al Hsu, a father of a son with Ds says that Ds has "become for us a window into the joy of the kingdom of God." If you are blessed to know a person with Ds that attends church you know exactly what he means. I can't wait to experience the bible through my sons eyes or life for that matter. Enjoy...
"...Jean Vanier, founder of L'Arche communities, which bring abled and disabled people together under one roof, warns in Living Gently in a Violent World that in a few years there may be no more children with Down syndrome in France because they will have all been aborted. In China, babies with disabilities are often abandoned. Extremist groups in the Middle East have even used people with mental disabilities as unwitting suicide bombers. The church must advocate on behalf of those most vulnerable to exploitation and abuse. Care for the disabled is a global justice issue.
The 2000 U.S. Census found that 19.4 percent of the population is affected by physical or intellectual disability. One in 140 children now has an autism spectrum disorder, according to the 2007 Annual Review of Public Health. Cerebral palsy, traumatic brain injuries, spina bifida, Alzheimer's, and a host of other conditions affect millions. If you don't currently know someone with a disability, chances are that you will.
All of us are only temporarily abled. We are only a car accident or stroke away from disability. As Joan Mahler, coordinator of L'Arche USA, told me, "All of us are abled in some ways and disabled in others. People with developmental disabilities often help all of us understand our own brokenness."
Please refer to the above link for the entire article - it's definitely worth your time.
Wednesday, October 22, 2008
In just over a week, children across America will be heading out to go treat-or-treating but this day can bring with it some unique challenges for parents. The last thing you want is for you or your child to end up on the front porch of a convicted felon or sex offender. Last year, my county mandated all sex offenders stay in their home on Halloween and the authorities made spot checks to ensure compliance. However, that doesn't do a bit of good when your child rings their door bell.
I spent 8 years as a Crime Analyst and I have a very close friend who sits on the parole board -any normal motherly concerns I would have had are elevated to code red - all the time. I know what is possible and you need to be mindful as well!
Before you and your child head out on Halloween be armed with information that can help keep them safe and ensure an excited time filled with lots of treats. I've provided two links that you can use to see where criminals live.
For those of you that live in New York - I've included a link to the State's official sex offender website. The other, Family Watchdog is national organization and includes "all" offenders.
Be safe and have a Happy Halloween!
New York State Division of Criminal Justice Services
Tuesday, October 21, 2008
He was so excited to be part of the shopping experience. He really could have sat in a cart long before now but I just think it was easier to just put his car seat in the cart. And, just for the record - it took me 10 minutes to figure out how to put this cover on!
Monday, October 20, 2008
Nathan will probably experience some sort of vision problem within his lifetime. Approximately, 70% of children with Ds have a vision related concern that could include being cross eyed. It is also likely that Nathan will have some level of hearing loss - it may be a selective hearing problem but so far so good! I'll keep you posted on this one.
Nathan has had several hearing tests and is scheduled for a retest in November. Nathan has also visited the pediatric opthomologist and his vision was within the "normal range" for a child of Nathan's age.
Hypothyroidism is also a concern among those with Ds - Nathan was tested at birth and the results were fine. He was tested again this week and we're currently awaiting those results.
THE BIG ONE - the incidence of Leukemia is 15 to 20% higher for children with Ds. This literally keeps me up at night and we pray that God spares Nathan of this challenge. Please keep him in your prayers. I'm not sure of the exact test date but I think it's somewhere around 15 months old.
That's it for today! In Part III, we'll move away from the straight medical concerns and talk about dental concerns, developmental delays, and mental capacity. Stay tuned!
Babies With Down Syndrome: A New Parent's Guide
Sunday, October 19, 2008
Saturday, October 18, 2008
When Nathan was born and the postnatal diagnosis of Ds was confirmed the immediate medical concern was Nathan’s heart. Forty to 50% of children born with Ds have a heart defect that requires corrective surgery. The second immediate concern was Nathan’s digestive system - 10 to 20% of children with Ds are born with gastrointestinal malformations. Now, reflecting on this time in the hospital, I remember not knowing this information until after the tests were complete. When the neonatal doctor gave us these statistics he also gave us Nathan’s clean bill of health! Thank God.
Children born with Ds have also have a higher than normal risk of respiratory infections including sleep apnea, which is the temporary interruption of breathing. When Nathan was about 6 months old we brought him to the Ear Nose and Throat Specialist – Nathan was having some breathing issues that we felt warranted a visit for the check-up. After some invasive tubes down his throat we learned everything was just fine – Nathan would grow out of his issues. We return in one year for a follow-up.
Children with Ds also have an increased risk for respiratory infections. Nathan’s first cold was at eight months of age. Let’s pray he continues down this healthy non-cold road!
Tomorrow we’ll discuss vision, hearing, hypothyroidism, and Leukemia.
Babies With Down Syndrome: A New Parent's Guide
Friday, October 17, 2008
Thursday, October 16, 2008
Wednesday, October 15, 2008
Emily Perl Kinglsey's son Jason has Down syndrome and the poem is her reflection of what it's like to have a child with a disability. This poem can speak to each of us regardless of your abilities - the moral of the story is - everything in life is what you make it. You choose.
WELCOME TO HOLLAND
by Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that
Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Tuesday, October 14, 2008
In honor of National Down Syndrome Awareness Month in October, Parenting Magazine is showcasing photos of beautiful babies, who happen to have Down Syndrome.
NATHAN MADE THE PHOTO MONTAGE!!!
You should check out the other pictures - they are adorable!
Monday, October 13, 2008
Sunday, October 12, 2008
"What a beauty she is! But looks aren't everything and it's important to me that as her personality continues to develop Jeff and I instill the right values.
Through the years, things that once had a stigma or were looked at as "different" have become mainstream. An important part of that is teaching children from the time they are born that differences are good and should be embraced - whether they are physical, mental or cultural
That's one reason I'm glad Luci has two friends with Down syndrome. These two boys are absolute joys and she loves playing with them. She has no idea there is anything "different" about them and she won't unless society teaches her there is.
My hope is that if someday Luci hears a cruel joke or a nasty comment, her reaction will be one of shock and confusion. I hope she grows up thinking that having friends with disabilities is completely normal...that having friends with different levels of mental or physical abilities is the same as having friends with different eye or hair color...that she grows into the compassionate person I know she can be if nurtured."
Saturday, October 11, 2008
I am constantly asking Nathan's therapists about how he's developing and how he compares with other children with Down syndrome. Today, I asked when she thought Nathan might crawl or walk because so often children with Ds may not crawl or walk until much later than most typically developing children. She thinks that Nathan is strong and has the strength and motivation to crawl and walk - he just needs to work on his coordination. She estimates Nathan will be crawling in a month and walking by about 14 months - we'll see!
During this conversation she said that she was so glad to be working with Nathan because he has shown her the developmental potential of children with Ds! I almost cried! I was so proud of Nathan!!! She gave our family the credit because of how much we work with Nathan when his therapists aren't here. What she neglected to recognize was her role in his success - she deserves just as much of the credit! All of his therapists do! Nathan is an amazing little boy who has continued to defy the odds. I pray more people see his potential and feel blessed by it.
Thursday, October 9, 2008
This story begins at my first board meeting of the Ds Resource Center. I was informed by a mother of a daughter with Ds about what she believes our future holds. She said that we would "lose" friends now that we have Nathan and I should be prepared for it. I couldn't believe it. That thought never crossed my mind - ever. I asked her why? She said that some people simply can't handle being around a child with Down syndrome. When I came home I told Danny what was said and how surprised I was to hear that - I have friends with children that have special needs and I've never felt embarrassed to invite them to into my home or felt uncomfortable in their presence. But, that's us.
Danny and I made our predictions but so far it hasn't happened. Maybe that's because Nathan is a baby. Maybe as he gets older things will change. What I do know is that those people who are embarrassed by my son and can't handle being around us were never our friends to begin with and our family will be better off without them. See Ya!
What I’m even more excited about is being a part of the Resource Center and watching these hopes and dreams to true.
"For Jen to become a famous model, like the role-model she is for us!"
"For Nathan: May all your dreams come true and may you grow up to be whatever you choose to be!"
"to live in NYC and work in a theater on Broadway!"
"For all children with special needs to live as independently as they can."
"We want our daughter to be a properly employed taxpayer! And, very happy."
"It is my dream that when people look at my daughter, they only see the beautiful person she is."
"My dream: for Nathan and other children with Down syndrome to teach and inspire others."
"I wish for all to understand Down syndrome and embrace them all."
"For the world to know what we already know."
"My dream is for you to grow up with a life filled with love and family around always. Love you so much."
"For my daughter to get a full life experience – college and marriage. Love Dad"
"You are our miracle girl: we love you!"
"My hopes and dreams for you my lovely child is to live each day of life to the fullest & always show your beautiful smile."
"My dream: Congressman Nathan Terry!!"
"I wish for their success and happiness and wish that everyone could be as nice and loveable as the ones with Down syndrome."
Wednesday, October 8, 2008
But what exactly is it?
At conception, Nathan received 23 chromosomes from Danny and 23 from me - each of our cells contain 46 chromosomes, or 23 "identical" pairs. Chromosomes are made up of strands of DNA - think of them like a spiral staircase carrying your genetic code. Every cell in your body contains these 23 pairs of "identical" chromosomes (22 determine genetic make-up and the 23rd determines gender).
In order for a fertilized embryo to develop into a fetus, cell division and duplication must take place. It is during the initial cell division that Nathan's Ds came to be - his 21st chromosome did not divide - it was copied as a whole. This is called nondisjunction, which literally means, "not coming apart." Once the initial nondisjunction occurred each division continued in exactly the same manner.
When Nathan was born Danny and I began asking - did we do something to cause Nathan's Ds? Danny really took it hard blaming himself and it broke my heart. But, we soon learned that it wasn't Danny's fault and the doctors said it wasn't something I had done either. However, my research has found, that although I did nothing to cause Nathan's Ds, that 90% of the time it is the mothers 21st chromosome that doesn't divide properly. Is that hard to deal with? Sure, but I'm over it. Does that mean if Danny and I have another baby that this could happen again - it's not impossible but highly unlikely - that's why it's called a genetic anomaly.
The above picture is what Trisomy 21 looks like at the cellular level. As you can see, there are three copies of chromosome 21.
So how does the extra chromosome affect Nathan? What could be in his future?
I'll tell you tomorrow.
Tuesday, October 7, 2008
Monday, October 6, 2008
Saturday, October 4, 2008
* That 1 in 5 children with Ds play a musical instrument? For children older than ten, that number doubles. One of five children with DS sing in a choir or vocal group, for children older than ten, it is every one in three...
* Two out of every three children with Ds like to draw and/or paint pictures
* Approx. 9 out of every 10 individuals with Ds listened to someone read a book more than three times a week between the ages 2-5
* Approx. 7 out of 1o children w/ Ds use total communication (signs, etc) between the ages of 2-5
* Approx. 7 out of 10 kids with Ds saw a speech therapist two or more times a week between the ages of 2 and 5
* Approx. 1 of every 3 children with Ds older than ten rides a bike without training wheels
* Seven of every ten individuals with Ds older than ten participates on an athletic team through Special Olympics
* Two out of every five individuals with Ds participates on an integrated athletic team.
* According to their families, 3 out of 5 individuals with Ds know how to operate a computer.
* One of every three individuals with Ds older than reads the daily newspaper
* Seven of ten individuals with Ds older than 10 read books on their own for personal enjoyment
* One of two children with Ds go to school in a mainstreamed class.
* 3 of 5 children with Ds participate in school activities that are open to all students.
Friday, October 3, 2008
* According to their families, 1 of 5 children with Ds talk on the phone with friends more than three times a week. For children older than ten, that number doubles.
* One in three children with Ds write email regularly
* Two of three children with Ds over age ten have a boyfriend or girlfriend!
*Approx. 7 out of ten children with Ds pray on a regular basis.
* According to their families, approx. 7 of 10 individuals with Ds imitate characters from a television program or movie*
Approx. 2 out of 3 individuals with Ds older than 10 prepare their own breakfast each morning.
* Three out of four individuals with Ds older than 10 make their own bed in the morning.
* One out of two individuals with Ds (older than 18) work in a non sheltered workplace.
* One in five individuals with Ds (18 or older) lives on his/her own.
Wednesday, October 1, 2008
Here's a a little sneak peak! This is an event not to miss! I'm warning you - people will be talking about this for years to come and you'll be sorry you missed it!
There's more too!!!! Stay tuned!
Today's tid bit is an update on the impending Buddy Walk that our committee has been working diligently to put together! What a TEAM we have!!! With awesome, committed, passionate, and motivated people - YOU CAN CHANGE THE WORLD! And, that is a fact.
At last check we had over 500 registered participants! That is so far the largest crowd ever at a Capital Region Buddy Walk!!!!!! We could expect upwards of 700 or more! YEAH!
Each pre-registered participant will receive a Buddy Walk t-shirt - this is the FIRST year that t-shirts have ever been provided at the Buddy Walk!!!!!! A special thank you to my friend Lisa Payne, for making this possible. Each pre-registered family also will receive 2 Down Syndrome Aim High Resource water bottles! Thanks Vicki!! And, if that wasn't enough -- each pre-registered family will go home with a Thank You bag - filled with products from Bumble and Bumble New York, Wella, Buddy Walk Kozzi's and much more!!! These bags are so full - we couldn't fit one more thing in them!!!!!!!!!!!!!!!!! Isn't this awesome!!! There is much more to tell you about what's happening on Sunday but that's for tomorrow. You don't want to miss it!
http://www.dsahrc.org/ to sign up! Why should you sign up even if you won't get all these great gifts? There is lots more fun and freebies to be had!!!
These bags are the work of Kathy Smith, Nathan's aunt and Bernardina Torrey, one of my best friends - As you can see, the bags are beautiful - each was assembled with a great deal of love for Nathan and each family touched by Down syndrome. It took a great deal of effort to secure each of the donated items and even more time to assemble them. Do you know they tied bubbles on each of these bags for the kids! And, there are 250 of them!!!
Do you know the best part about this?!!!! Kathy and Bernardina can't wait to do it again next year!!!!!!!!!!!!!!!! God Bless both these women.
Sunday, September 28, 2008
- He weighed in at just over three bags of potatoes on Friday (that's 15.5 pounds);
- He wears 3 wide shoes;
- 6 to 9 months clothes fit him perfectly; and
- His ole BLUE EYES are still sticking around!
- Toys that make noise and light up top his list;
- Pop-up books are another of his favorites;
- Nathan is starting to creep backwards - more often on the hardwood than the carpet;
- He sits up for long periods of time on his own;
- Nathan is starting to drink from a sippy cup;
- he doesn't have any teeth yet; and
NATHAN'S FIRST WORDS - DADA DADA DADA DADA DADADA