Children with Down syndrome are often identified at birth as a result of the physical characteristics associated with the syndrome. Some children exhibit only a few characteristics; others exhibit many. The most common features associated with Down syndrome include:
* Low muscle tone (babies appear "floppy")
* Flat facial features, with a small nose
* Upward slant to the eyes
* Small skin folds on the inner corner of the eyes
* Small shaped ears
* Single deep crease across the center of the palm
* Hyperflexibility (excessive ability to extend joints....like putting both legs far behind your head!)
* Extra space between the big toe and the second toe (great for sandal wearing :)
* Enlarged tongue that tend to stick out
Typically, individuals with Down syndrome are recognizable to a lot people because of these distinct physical characteristics. On occasion, I have had people ask, "Does she (Sophia) have Down syndrome?" And I"ll smile and say, "yes." And then they go on to tell me about someone they know or love who also has Down syndrome.....because honestly, it's a cool group to be in, and as parents or loved ones, we like to connect with other families.
I can't recall any time though where someone has just asked to be nosy. And I don't usually just mention it to people, unless there is a significant reason to mention it. Even when I fill out medical forms, sometimes I forget to write down "Down syndrome".
I don't feel the need to associate Sophia with her diagnosis on a daily basis. Not because I hate Down syndrome or I'm ashamed or embarrassed that Sophia has Down syndrome, but because when I look at my daughter, I don't see a little girl with Down syndrome.....I just see a little girl (who sometimes has horns growing out the top of her pretty blond head!) But just because I don't see Down syndrome every day, I still know that it exists. I know that because Sophia has Down syndrome, there are challenges that she faces, challenges that we face as a family, every single day. Some days those challenges are mild, almost unnoticeable. Other days......well lets just say her actions can speak VOLUMES some days.
I never want people close to Sophia to look at her and not understand her. I never want people to assume things about Sophia, or about the population of people who have Down syndrome. That's why I post things on Facebook. That's why I write on my blog. That's why I go to my kids' school and I talk to their friends and classmates, not only about Down syndrome, but about Sophia.....the person Sophia, not the diagnosis that follows her. By putting Sophia's truth out there, I hope that people will accept my daughter for who she is.....the good, the bad and the beautiful.
Monday, October 6, 2014
Sunday, October 5, 2014
Saturday, October 4, 2014
No, Sophia!
One of Sophia's favorite books right now is, No, David!, by David Shannon. Every time we read this book, I can't help myself but to think that this title could easily be changed from, David, to Sophia :)
Behavior problems are something that all parents deal with at one time or another with their kids. Not obeying your parents, or other adults in authority, is part of the job requirement when you're a kid. But sometimes behaviors can start to interfere with development and learning. They can also begin to be disruptive to the family, school or workplace, and may be harmful to the child or adult or to others.
Children and adults with Down syndrome are more likely to have medical problems starting as babies, all the way into adulthood. So the first step in evaluating a child or adult with Down syndrome who presents with a behavior concern is to determine if there are any acute or chronic medical problems related to the identified behavior. Some of the more common medical problems that may be associated with behavior changes are:
* vision or hearing deficits
* thyroid function
* celiac disease
* sleep apnea
*gastroesophageal reflux
* constipation
* depression
* anxiety
Evaluation by the primary care physician is important when first noticing behavior problems in children or adults with Down syndrome.
The behavioral challenges seen in children with Down syndrome are usually not all that different from those seen in typically developing children. However, they may occur at a later age and last somewhat longer. For example, temper tantrums are typically common in 2-3 year olds, but for a child with Down syndrome, they may begin at 3-4.
When evaluating behavior in a child or adult with Down syndrome it is also important to look at the behavior in the context of the individual's developmental age, not only his or her chronological age. So even though a child may be 5-6 years old, developmentally they may be more around the age of a 3-4 year old.....causing some behaviors to still be "normal" for that age of development. Receptive and expressive language skills are also important to look at, because many behavior problems are related to frustration with communication. Since communication, especially expressive communication, can come later for a lot of individuals with Down syndrome, it is important to help the child/adult find ways to communicate more effectively.
Some common behavior concerns for parents and caregivers of loved ones with Down syndrome are:
* wandering/running off
* stubborn/oppositional behavior
* attention problems
* obsessive/compulsive behaviors
* autism spectrum disorder
If your child is a wanderer, or tends to run off when you are in public places, it can be a very scary thing as a parent. Sophia definitely likes to do what she wants to do, and when she wants to do it. Even though Sophia is small,with little legs, that girl can disappear in a matter of seconds! The one time I lost track of Sophia we were at a department store shopping. I had her in the cart, belted in, but she desperately wanted out. I'm a sucker for giving her chances to prove to me that she will indeed follow the rules. I know sooner got her out of the cart and she darted behind some shelves of clothes. I waited to see which side she would come out on, but I never saw her. When I went to look behind the shelf, there was no one there. I immediately went into panic mode. I looked all over that area, then began my search around the area close by. Nothing. I went to the front to report her missing, scared to death she would make it out the front doors and into the parking lot. After about 5 minutes I found her on the other side of the store just wandering around, saying "Hieee" to everyone walking by. Probably one of the scariest moments for me so far.
Stubborn.....that might as well be Sophia's middle name! She will pull the non-compliant card whenever and wherever she feels like it, and there is very little that anybody can do about it. Children with Down syndrome are often very good at distracting parents or teachers when they are challenged with a difficult task, or asked to do something they don't want to do. Right now we are struggling with extreme stubbornness at school. Apparently Sophia didn't get the memo that you're expected to follow rules, AND learn stuff ALL DAY LONG.
Hi, my name is Sophia. I like to......SQUIRREL?!! Oh the good old attention span, or lack there of. Individuals with Down syndrome can have ADHD, but they should be evaluated for attention span and impulsivity based on developmental age and not strictly chronological age. Sophia definitely has trouble staying focused and on task. She is constantly needing cued on what she is suppose to be doing, or what she is NOT suppose to be doing! Impulsiveness is a real struggle too. Sophia rarely thinks before she acts. She just goes or does, and doesn't even consider the consequences. Maybe this is one of the reasons why I resemble a helicopter....constantly hovering around her 24/7 :)
Obsessive/Compulsive behaviors can sometimes be very simple; for example, a child may always want the same chair. However, obsessive/compulsive behavior can also be more subtly repetative, like dangling beads or belts when not engaged directly in an activity. While the number of compulsive behaviors in children with Down syndrome is no different than those in typical children at the same mental age, the frequency and intensity of the behavior is often greater.
Autism is seen in approximately 5-7 % of individuals with Down syndrome. The diagnosis is usually made at a later age (6-8 years of age) than in the general population. Regression of language skills, if present, also occurs later (3-4 years of age). Potential intervention strategies are the same as for any child with autism. It is important for signs of autism to be identified as early as possible so the child can receive the most appropriate therapeutic and educational services.
So when should a parent or caregiver approach behavior issues in individuals with Down syndrome? (I'm trying to figure that out myself right now!) Some things to think about can be:
* Rule out a medical problem that could be related to the behavior.
* Consider emotional stresses at home, school or work that may impact behavior
* Work with a professional (psychologist, behavioral pediatrician, counselor) to develop a behavior treatment plan using the ABC's of behavior. (Antecedent, Behavior, Consequence of the Behavior)
* Medication may be indicated in particular cases such as ADHD and autism
Intervention strategies for treatment of behavior problems are variable and dependent on the individual's age, severity of the problem and the setting in which the behavior is most commonly seen. Local parent and caregiver support programs can often help by providing suggestions, support and information about community treatment programs. Psychosocial services in the primary care physician's office can be used for consultative care regarding behavior issues. Chronic problems warrant referral to a behavioral specialist experienced in working with children and adults with special needs.
What about behavioral changes in adulthood? These can be caused by a number of factors:
* difficulty with transitions into adolescence or young adulthood
* loss of social networks
* departure of older siblings
* death of a loved one
* move out of the home or transfer from a protective school environment into a work situation
* sensory deprivation
* either visual (cataracts) or auditory (hearing loss)
* emotional trauma
* hypothyroidism
* obstructive sleep apnea
* depression
* Alzheimer's disease
Any time you ever have any concerns about your child's behavior, talk with the people who are around him or her the most. See if you can find a reason why they might be acting out differently. Never be afraid to seek help from your child's doctor or other trained professionals. Every child is different, and every child reacts to the environment around them differently.
Behavior problems are something that all parents deal with at one time or another with their kids. Not obeying your parents, or other adults in authority, is part of the job requirement when you're a kid. But sometimes behaviors can start to interfere with development and learning. They can also begin to be disruptive to the family, school or workplace, and may be harmful to the child or adult or to others.
Children and adults with Down syndrome are more likely to have medical problems starting as babies, all the way into adulthood. So the first step in evaluating a child or adult with Down syndrome who presents with a behavior concern is to determine if there are any acute or chronic medical problems related to the identified behavior. Some of the more common medical problems that may be associated with behavior changes are:
* vision or hearing deficits
* thyroid function
* celiac disease
* sleep apnea
*gastroesophageal reflux
* constipation
* depression
* anxiety
Evaluation by the primary care physician is important when first noticing behavior problems in children or adults with Down syndrome.
The behavioral challenges seen in children with Down syndrome are usually not all that different from those seen in typically developing children. However, they may occur at a later age and last somewhat longer. For example, temper tantrums are typically common in 2-3 year olds, but for a child with Down syndrome, they may begin at 3-4.
When evaluating behavior in a child or adult with Down syndrome it is also important to look at the behavior in the context of the individual's developmental age, not only his or her chronological age. So even though a child may be 5-6 years old, developmentally they may be more around the age of a 3-4 year old.....causing some behaviors to still be "normal" for that age of development. Receptive and expressive language skills are also important to look at, because many behavior problems are related to frustration with communication. Since communication, especially expressive communication, can come later for a lot of individuals with Down syndrome, it is important to help the child/adult find ways to communicate more effectively.
Some common behavior concerns for parents and caregivers of loved ones with Down syndrome are:
* wandering/running off
* stubborn/oppositional behavior
* attention problems
* obsessive/compulsive behaviors
* autism spectrum disorder
If your child is a wanderer, or tends to run off when you are in public places, it can be a very scary thing as a parent. Sophia definitely likes to do what she wants to do, and when she wants to do it. Even though Sophia is small,with little legs, that girl can disappear in a matter of seconds! The one time I lost track of Sophia we were at a department store shopping. I had her in the cart, belted in, but she desperately wanted out. I'm a sucker for giving her chances to prove to me that she will indeed follow the rules. I know sooner got her out of the cart and she darted behind some shelves of clothes. I waited to see which side she would come out on, but I never saw her. When I went to look behind the shelf, there was no one there. I immediately went into panic mode. I looked all over that area, then began my search around the area close by. Nothing. I went to the front to report her missing, scared to death she would make it out the front doors and into the parking lot. After about 5 minutes I found her on the other side of the store just wandering around, saying "Hieee" to everyone walking by. Probably one of the scariest moments for me so far.
Stubborn.....that might as well be Sophia's middle name! She will pull the non-compliant card whenever and wherever she feels like it, and there is very little that anybody can do about it. Children with Down syndrome are often very good at distracting parents or teachers when they are challenged with a difficult task, or asked to do something they don't want to do. Right now we are struggling with extreme stubbornness at school. Apparently Sophia didn't get the memo that you're expected to follow rules, AND learn stuff ALL DAY LONG.
Hi, my name is Sophia. I like to......SQUIRREL?!! Oh the good old attention span, or lack there of. Individuals with Down syndrome can have ADHD, but they should be evaluated for attention span and impulsivity based on developmental age and not strictly chronological age. Sophia definitely has trouble staying focused and on task. She is constantly needing cued on what she is suppose to be doing, or what she is NOT suppose to be doing! Impulsiveness is a real struggle too. Sophia rarely thinks before she acts. She just goes or does, and doesn't even consider the consequences. Maybe this is one of the reasons why I resemble a helicopter....constantly hovering around her 24/7 :)
Obsessive/Compulsive behaviors can sometimes be very simple; for example, a child may always want the same chair. However, obsessive/compulsive behavior can also be more subtly repetative, like dangling beads or belts when not engaged directly in an activity. While the number of compulsive behaviors in children with Down syndrome is no different than those in typical children at the same mental age, the frequency and intensity of the behavior is often greater.
Autism is seen in approximately 5-7 % of individuals with Down syndrome. The diagnosis is usually made at a later age (6-8 years of age) than in the general population. Regression of language skills, if present, also occurs later (3-4 years of age). Potential intervention strategies are the same as for any child with autism. It is important for signs of autism to be identified as early as possible so the child can receive the most appropriate therapeutic and educational services.
So when should a parent or caregiver approach behavior issues in individuals with Down syndrome? (I'm trying to figure that out myself right now!) Some things to think about can be:
* Rule out a medical problem that could be related to the behavior.
* Consider emotional stresses at home, school or work that may impact behavior
* Work with a professional (psychologist, behavioral pediatrician, counselor) to develop a behavior treatment plan using the ABC's of behavior. (Antecedent, Behavior, Consequence of the Behavior)
* Medication may be indicated in particular cases such as ADHD and autism
Intervention strategies for treatment of behavior problems are variable and dependent on the individual's age, severity of the problem and the setting in which the behavior is most commonly seen. Local parent and caregiver support programs can often help by providing suggestions, support and information about community treatment programs. Psychosocial services in the primary care physician's office can be used for consultative care regarding behavior issues. Chronic problems warrant referral to a behavioral specialist experienced in working with children and adults with special needs.
What about behavioral changes in adulthood? These can be caused by a number of factors:
* difficulty with transitions into adolescence or young adulthood
* loss of social networks
* departure of older siblings
* death of a loved one
* move out of the home or transfer from a protective school environment into a work situation
* sensory deprivation
* either visual (cataracts) or auditory (hearing loss)
* emotional trauma
* hypothyroidism
* obstructive sleep apnea
* depression
* Alzheimer's disease
Any time you ever have any concerns about your child's behavior, talk with the people who are around him or her the most. See if you can find a reason why they might be acting out differently. Never be afraid to seek help from your child's doctor or other trained professionals. Every child is different, and every child reacts to the environment around them differently.
Friday, October 3, 2014
2014 Buddy Walk
Mark your calendars for Saturday, October 11, 2014, and come to Indianapolis to walk with Sophia and her team in the 17th annual Down Syndrome Indiana Buddy Walk!!!
The Buddy Walk is a 2.6 mile, no-fee, walk around the canal, located in the White River State Park. Festivities usually start around 9 am at Celebration Plaza, and the walk begins at noon. This family-friendly event is open to all children and adults with Down syndrome, their families, friends and thousands of local supporters.
The Buddy Walk was established in 1995 by the National Down Syndrome Society (NDSS) as an event to promote acceptance and inclusion of people with Down syndrome. Walks usually occur in October in observance of Down Syndrome Awareness Month.
Nationally, the Buddy Walk is the most widely recognized public awareness program for the Down syndrome community. Locally, it is currently the largest fundraising event for Down Syndrome Indiana, with this year's goal set at $230,000!
The Buddy Walk has three primary goals:
* To promote acceptance and inclusion of people with Down syndrome
* To raise funds locally and nationally for education, research and advocacy programs
* To enhance the position of the Down syndrome community, enabling us to positively influence local and national policy and practice.
Proceeds from the walk help fund Down Syndrome Indiana programs and services that help individuals with Down syndrome and their families. These programs and services include, but are not limited to:
* New Parent Information and Resource Packets - We received one of these packets while Sophia was at Riley Children's Hospital. It contains a book of some kind featuring children/adults with Down syndrome and usually stories from their families. It has a lot of information about resources, and things to think about after your take your baby home.
* Educators' Resources - We also received one of these from Down Syndrome Indiana, upon request, and it contained a few children's books to read to your child's class. As well as books that help you as the parent, and the child's teacher, know how to better teach math and reading to children with Down syndrome.
* Social Activities - Down Syndrome Indiana puts on a lot of events for the Down syndrome community. They have dances, picnics, and outings all over the Indianapolis area....sometimes the events are even free to the families! They also help support individuals with Down syndrome who are self advocates and like to get out in the community and do things together. Since we don't live close to a lot of events that take place in Indianapolis, Down Syndrome Indiana helps to fund our local play/support group that was started in Terre Haute, called Wabash Valley S.T.A.R.S. It gives families in the Wabash Valley a closer place to meet and get to know one another and build relationships with other families walking the same road.
* Support for Research and Advocacy - Even though Down syndrome can not be prevented, it's something that occurs from the moment of conception, there is research being done on ways to possibly improve cognition in individuals with Down syndrome. Also, Alzheimer's disease is something that is very common in most individuals with Down syndrome as they age. Research is being done to find what it is about that extra chromosome that causes Alzheimer's and not only helping to find a cure for the Down syndrome community, but for the general population as well.
Down Syndrome Indiana and the National Down Syndrome Society, help to advocate on a larger scale for all individuals with Down syndrome and their families. By trying to pass laws that will benefit our children in their futures.
* Informational and Educational Conferences - One of the big conferences this year in Indianapolis, was the National Down Syndrome Congress Convention! This conference is held annually, all over the country, and this past summer we were so lucky to have it being held almost in our own backyard! Each year, thousands of people from across the globe attend the National Down Syndrome Congress Convention. For most, it's to hear the latest information from world-renowned experts. For others, it's a great vacation. But, for nearly all, there's the one of a kind NDSC family reunion feeling that permeates the convention weekend. Next summer, June 25-28, 2015, the 43rd Annual NDSC Convention will be held at the JW Marriott Desert Ridge in Phoenix, Arizona.
Helping support Down Syndrome Awareness is so important to us. Each year we have helped raise money, in Sophia's name, to give back to Down Syndrome Indiana. In fact, Sophia's Stars have helped raise over $10,000 in the past 5 years! Promoting acceptance, awareness and inclusion for not only for Sophia, but for the thousands of people rocking their extra chromosome each and every day!
If you would like to make a donation to Down Syndrome Indiana, please visit Sophia's fundraising page and do so today! It's fast and easy, and we would greatly appreciate it! Click HERE to donate.
Hope to see a lot of OLD and NEW faces walking with Sophia at the Buddy Walk this year!
The Buddy Walk is a 2.6 mile, no-fee, walk around the canal, located in the White River State Park. Festivities usually start around 9 am at Celebration Plaza, and the walk begins at noon. This family-friendly event is open to all children and adults with Down syndrome, their families, friends and thousands of local supporters.
The Buddy Walk was established in 1995 by the National Down Syndrome Society (NDSS) as an event to promote acceptance and inclusion of people with Down syndrome. Walks usually occur in October in observance of Down Syndrome Awareness Month.
Nationally, the Buddy Walk is the most widely recognized public awareness program for the Down syndrome community. Locally, it is currently the largest fundraising event for Down Syndrome Indiana, with this year's goal set at $230,000!
The Buddy Walk has three primary goals:
* To promote acceptance and inclusion of people with Down syndrome
* To raise funds locally and nationally for education, research and advocacy programs
* To enhance the position of the Down syndrome community, enabling us to positively influence local and national policy and practice.
Proceeds from the walk help fund Down Syndrome Indiana programs and services that help individuals with Down syndrome and their families. These programs and services include, but are not limited to:
* New Parent Information and Resource Packets - We received one of these packets while Sophia was at Riley Children's Hospital. It contains a book of some kind featuring children/adults with Down syndrome and usually stories from their families. It has a lot of information about resources, and things to think about after your take your baby home.
* Educators' Resources - We also received one of these from Down Syndrome Indiana, upon request, and it contained a few children's books to read to your child's class. As well as books that help you as the parent, and the child's teacher, know how to better teach math and reading to children with Down syndrome.
* Social Activities - Down Syndrome Indiana puts on a lot of events for the Down syndrome community. They have dances, picnics, and outings all over the Indianapolis area....sometimes the events are even free to the families! They also help support individuals with Down syndrome who are self advocates and like to get out in the community and do things together. Since we don't live close to a lot of events that take place in Indianapolis, Down Syndrome Indiana helps to fund our local play/support group that was started in Terre Haute, called Wabash Valley S.T.A.R.S. It gives families in the Wabash Valley a closer place to meet and get to know one another and build relationships with other families walking the same road.
* Support for Research and Advocacy - Even though Down syndrome can not be prevented, it's something that occurs from the moment of conception, there is research being done on ways to possibly improve cognition in individuals with Down syndrome. Also, Alzheimer's disease is something that is very common in most individuals with Down syndrome as they age. Research is being done to find what it is about that extra chromosome that causes Alzheimer's and not only helping to find a cure for the Down syndrome community, but for the general population as well.
Down Syndrome Indiana and the National Down Syndrome Society, help to advocate on a larger scale for all individuals with Down syndrome and their families. By trying to pass laws that will benefit our children in their futures.
* Informational and Educational Conferences - One of the big conferences this year in Indianapolis, was the National Down Syndrome Congress Convention! This conference is held annually, all over the country, and this past summer we were so lucky to have it being held almost in our own backyard! Each year, thousands of people from across the globe attend the National Down Syndrome Congress Convention. For most, it's to hear the latest information from world-renowned experts. For others, it's a great vacation. But, for nearly all, there's the one of a kind NDSC family reunion feeling that permeates the convention weekend. Next summer, June 25-28, 2015, the 43rd Annual NDSC Convention will be held at the JW Marriott Desert Ridge in Phoenix, Arizona.
Helping support Down Syndrome Awareness is so important to us. Each year we have helped raise money, in Sophia's name, to give back to Down Syndrome Indiana. In fact, Sophia's Stars have helped raise over $10,000 in the past 5 years! Promoting acceptance, awareness and inclusion for not only for Sophia, but for the thousands of people rocking their extra chromosome each and every day!
If you would like to make a donation to Down Syndrome Indiana, please visit Sophia's fundraising page and do so today! It's fast and easy, and we would greatly appreciate it! Click HERE to donate.
Hope to see a lot of OLD and NEW faces walking with Sophia at the Buddy Walk this year!
Thursday, October 2, 2014
Can I Get a Doctor?
**This post was originally written on October 25, 2012**
Although babies with Down syndrome can be just as healthy as any other child, they can also have an increased risk for a wide range of medical problems. Even though some of these problems, like congenital heart defects, increased susceptibility to infection, respiratory problems, gastrointestinal disorders and childhood leukemia can be quite serious, the good news is that medical treatments have improved substantially and most of these health problems are now treatable, and the vast majority of babies with Down syndrome grow up healthy and active
Between 30 and 45 percent of babies with Down syndrome are born with heart defects. These defects vary from mild defects which may disappear with time, to severe defects which will require major surgery. The most common congenital (present at birth) heart defect is Atrioventricular (AV) spetal defect, which is what Sophia had. This occurs when the valves separating the atrium (upper chamber of the heart) from the ventricle (lower chamber of the heart) leak allowing blood to flow in the wrong direction. This problem is quite serious but can be corrected with surgery in infancy. We found out about Sophia's heart defect right before her first surgery when she was only 2 days old. We spent the next 6 months monitoring her heart and trying to fatten her up for preparation for open heart surgery. At 6 months old, December 1, 2009, Sophia got a healthy heart! She spent 9 days in the hospital recovering from surgery and was such a trooper through the whole thing. Sophia now has a healthy heart and shouldn't have any future limitations because of the previous defect.
**recovering from open heart surgery**
Children with Down syndrome are also at a higher risk to have thyroid problems as well. Hypothyroidism being the most common type of thyroid problem both among the general population and children with Down syndrome. Because of this higher risk, it is recommended that children with Down syndrome have their thyroid checked annually. For the first year it was recommended that Sophia have her thyroid checked twice, every 6 months. Then after that we were told to have it checked annually, which we do.
The gastrointestinal (GI) tract, consists of the parts of the body that take in food, extract the nutrients, and dispose of waste. Gastrointestinal problems tend to be more common in children with Down syndrome than in the general population. One of the more common anatomical anomalies (the structure of the organs is abnormal) is a duodenal atresia, which is the narrowing of the small intestine causing the first part of the intestine where it connects to the stomach to be completely blocked off. Since no food can pass from the stomach into the intestines, this condition must be treated immediately by surgically removing the blocked part of the intestine. This is what initially sent us out of Terre Haute and up to Riley Children's Hospital the day after Sophia was born. Two days after birth, on June 8, 2009, Sophia underwent her first surgery to repair her duodenal atresia.
**Sophia had to have her stomach emptied out by a tube before and after her duodenal atresia surgery. Before because there was no where for her stomach bile to go since there was a blockage, and for a while after while the repair healed.**
The most common functional (the organs do not work the way they should) GI disorder is esophageal motility disorders and gastro-esophogeal reflux. Children with Down syndrome often have problems with reflux. Reflux does not mean that the child spits up during or after a feeding. In most cases, this simply means the child has swallowed air. Reflux can occur because the esophagus is having trouble propelling food into the stomach or it may occur because the stomach is emptying too slowly. We struggled with this for a very long time when Sophia was a baby. Her stomach was very slow to empty causing us to have to feed her very small amounts of formula, at a very slow pace; practically feeding her consecutively 24 hours a day in the very beginning. In many cases the child will out grow the problem.
Children with Down syndrome are at risk for respiratory infections. Some respiratory infections are caused by a weak cough, which is sometimes seen in children with hypotonia (low muscle tone.) Other causes of respiratory infection are heart problems leading to fluid in the lungs, regurgitation of food from the stomach into the lungs (aspirating), and weakened immune systems. Because of Sophia's heart defect she had problems with fluid getting into her lungs. She was on medication to help prevent this, but because she needed a higher dosage, she landed herself back in the hospital right before she was about to turn 2 months old. Sleep apnea, temporary stopping of breathing during sleep, is also sometimes seen in children with Down syndrome. Sleep apnea is often caused by the adenoids or tonsils being too large for the size of the mouth. Symptoms of sleep apnea include restlessness, noisy breathing, and snoring. This can be a serious problem since the baby may have reduced oxygen levels to the brain. Sophia was sent home from the hospital at 1 month old with a sleep apnea monitor and oxygen, due to her heart defect. After a sucessful heart surgery, a sleep study was done and she was taken off the oxygen full time and no longer needed the monitor. She continued to have a few more sleep studies, where they monitor body functions including; brain (EEG), eye movements (EOG), muscle activity, heart rhythm (ECG), respiratory air flow and respiratory effort indicators. We later came to the conclusion that she would most likely benefit from having her tonsils and adenoids removed, which was done on November 3, 2011.
**The dreaded sleep study. I mean really, who can get a good nights sleep like this?!?!?**
**Recovering from having her tonsils and adenoids removed.**
Close to 70 percent of children with Down syndrome will have some type of vision problem. These problems include farsightedness, nearsightedness, strabismus (crossed eyes), amblyopia (lazy eye), astigmatism, cataracts, and blocked tear ducts. All of these problems can be treated if detected early. All children, not just children with Down syndrome, should have their eyes tested. Sophia had her vision tested twice, every 6 months, for the first year, then it was recommended to have them tested annually. Right now Sophia is a little farsighted, but is not in need of glasses at this time. Everything else with her eyes appear to be good.
A higher percentage of children with Down syndrome also tend to experience some type of hearing loss. Hearing loss can be treated with antibiotics to treat infections, eustachian tubes to remove fluid from the inner ear, or, if necessary, hearing aids. Again, with early detection, children with Down syndrome should be able to hear normally. Sophia failed her first newborn hearing test, but was re-tested a few months later and passed. Sophia has had her hearing checked about every 6 months from when she was born. Overall her hearing appears to be ok, but will be monitored annually now to make sure that no problems arise.
It is important to understand that any of these conditions can occur in any child, although they do tend to be more common in children with Down syndrome. When you look up medical problems + Down syndrome, it can be a little overwhelming and even frightening. You just have to remember to take one day at a time though. All children get sick and no one is exempt from health problems. As much stuff as we've went through with Sophia, it was all "fixable." It was a hard road to travel, I'm not going to lie, but I would do anything to make my children better and the bottom line is, all of the rocky roads that we've had to travel down, have only made us stronger in the end.
Wednesday, October 1, 2014
Down Syndrome Awareness Month
So many days throughout the year I try and raise awareness about Down syndrome and educate people on what it means to have an extra 21st chromosome. But because October is the official month for Down Syndrome Awareness, I try to make it a top priority to blog each day of the month in hopes of raising even more awareness! I have successfully completely the challenge of blogging all 31 days in support of Down Syndrome Awareness for the past 4 years, and even though blogging has taken a backseat in my life, I am determined to make year 5 a success too! I plan on sharing some posts from the past, and writing up some new posts as well. I hope that everyone who visits my blog this month will take away some piece of valuable information.
Sophia's birth has not only opened the eyes of our immediate family to the world of special needs, but she has opened up the eyes- and hearts- of so many people around us. Sophia is a spunky little blonde-haired, blue-eyed firecracker who loves life and people. She is a person first, with wants and needs just like anybody else. Of course Down syndrome is a part of her life, but it isn't her whole life. Her diagnosis doesn't define who she is as a person - she defines who she is as a person!
Sophia is so much like any other four year old. She loves to play outside. She loves swinging on her pet set, riding her bike in the street, and jumping on her mini trampoline. She loves to be around people, especially if she gets to be the center of attention! She loves music and can dance like nobody's business. She wants to be included in what is going on around her and be accepted by her peers. She has feelings just like anybody else and shows a wide range of emotions, depending on what is happening around her. Sophia loves school and riding the bus. She is a sponge - taking in new things each and every day. She is smart and capable of anything and everything her peers are capable of doing.
Sophia is amazing. She is my angel right here on earth. She has a way of always making everything better. I never thought I was a strong enough person to raise a child with special needs, but Sophia has taught me differently. Because of my daughter, I know that I can do anything that I set my mind to, and so can she!
Dixie
(Sophia's Mom)
Earlier this year Sophia participated in a project called 21 Dreams. She had her photo taken and it was put in a book, along with 20 other individuals who have Down syndrome. I was asked to write "our story" that would go in the book as well. The goal of the 21 DreamS project is to open people's eyes to life...to a life of awareness, acceptance, inclusion, and inspiration. We were so blessed to get to be a part of such an awesome project, and I wanted to share what I wrote.....
When Sophia was born I didn't know in those first moments that she had Down syndrome. All I saw was a baby- my baby- looking back at me with loving, baby blue eyes. She was everything I had prayed for. I have loved her from the moment I found out I was pregnant, but in those first few moments of actually meeting her, I was completely in love with everything about her.
Shortly after Sophia's birth, I remember getting the news that the doctors suspected that Sophia had Down syndrome. I remember waiting for them to tell me the bad news. Because the way they were acting, I just felt like there was something worse to come. But, at that moment, that was all they had to tell me. I had already seen my daughter though, and she looked fine. She was beautiful. She was my daughter and I loved her. To me, that was all that mattered. To me, she was perfect.
In the months that followed, Sophia did have some medical issues that tend to be more common in babies with Down syndrome. We spent some time in the hospital after Sophia's birth and went through a few surgeries. We were in and out of the doctors' offices regularly and began weekly therapies to help our daughter get strong. We were thrown into this new world of raising a child with special needs, and even though it can be a little overwhelming at times, it has been a life-changing experience for our family that has only made us grow as human beings.
Sophia's birth has not only opened the eyes of our immediate family to the world of special needs, but she has opened up the eyes- and hearts- of so many people around us. Sophia is a spunky little blonde-haired, blue-eyed firecracker who loves life and people. She is a person first, with wants and needs just like anybody else. Of course Down syndrome is a part of her life, but it isn't her whole life. Her diagnosis doesn't define who she is as a person - she defines who she is as a person!
Sophia is so much like any other four year old. She loves to play outside. She loves swinging on her pet set, riding her bike in the street, and jumping on her mini trampoline. She loves to be around people, especially if she gets to be the center of attention! She loves music and can dance like nobody's business. She wants to be included in what is going on around her and be accepted by her peers. She has feelings just like anybody else and shows a wide range of emotions, depending on what is happening around her. Sophia loves school and riding the bus. She is a sponge - taking in new things each and every day. She is smart and capable of anything and everything her peers are capable of doing.
Sophia is amazing. She is my angel right here on earth. She has a way of always making everything better. I never thought I was a strong enough person to raise a child with special needs, but Sophia has taught me differently. Because of my daughter, I know that I can do anything that I set my mind to, and so can she!
Dixie
(Sophia's Mom)
Tuesday, February 18, 2014
3 months
I can't believe it's been 3 months since I lasted posted something here! Okay, yes I can believe it. I always pump myself up to blog for 31 consecutive days in October and then November 1st comes and I'm done with blogging. It's just hard to find the time to write and sometimes it's hard to piece words together that will make any sense.
We started off the year welcoming our third daughter into our family. It felt like forever waiting for her to get here, and even though she has only been here for 6 1/2 weeks, it feels like she's been a part of our family for so much longer. She's beautiful. She is such a laid back baby, who just kind of rolls with the punches (sometimes literally thanks to a big sister who shall go unnamed.)
I questioned myself wanting another baby for a long time. Even though I have always wanted at least three babies, I just didn't know if it was something that was going to work for our family; for me. For three years after Sophia was born we fought one battle after another. In the beginning it was a lot of major medical stuff. An extended stay in the hospital, half of which was spent in the NICU. Then a surgery at 2 days old, another at 4 months, and open heart surgery at 6 months. All the while we were juggling with oxygen tanks and feeding tubes and apnea monitors and doctor visits once, twice, three times a week. Then throwing in just as many therapy visits each week as well. Needless to say, I had my hands full. I had begun to prepare myself that this baby #3 that I've always wanted, might not be something that I could handle on top of an already full plate. But then Sophia turned 3 and she started to eat! It was one of the best milestones she had accomplished. It was such a weight off of my shoulders. It kind of felt like we had won the final battle that we had been fighting since the day she was born. It felt amazing! It was after that I decided I didn't want to give up on my dream of having another baby, and so that is just what we did. And I am so glad I didn't give up on that dream, because our new baby girl, she completes this family perfectly.
I am so blessed to say that I have three amazingly, wonderful, perfect little girls that I love and adore. And most importantly, they are all happy, usually, and healthy! Having a healthy baby was my biggest fear this time around. I was terrified that I wouldn't get to bring my baby home right away. I would worry myself sick a lot of days thinking about all of the what if's. I didn't want to go down that road again. I mean, I would go down that road again if I had to, but I really didn't want to. And it scared me, through my whole pregnancy. I wasn't worried about having another child with Down syndrome or anything like that, I was just worried about having a sick baby. I am blessed that all of Sophia's health issues were treatable. But my eyes have been opened to so much more now and worrying, well that's just what I do.
Transitioning from two kids to three, had me a little nervous, but I have to say it hasn't really been all that bad, yet. My biggest struggle right now is just trying to keep overly loving hands off of the baby. Someone is always wanting to play, hold, pinch or scratch the baby, at all times. Poor thing can never have a moment of peace. And because I don't fully trust all of the little hands that are trying to love on the baby, I don't get a moment of peace either. But most of all, both of the girls have accepted having another sister wonderfully. They both love her to pieces and can be quite helpful when they want to be. I have to say, baby girl is a perfect fit.
We started off the year welcoming our third daughter into our family. It felt like forever waiting for her to get here, and even though she has only been here for 6 1/2 weeks, it feels like she's been a part of our family for so much longer. She's beautiful. She is such a laid back baby, who just kind of rolls with the punches (sometimes literally thanks to a big sister who shall go unnamed.)
I questioned myself wanting another baby for a long time. Even though I have always wanted at least three babies, I just didn't know if it was something that was going to work for our family; for me. For three years after Sophia was born we fought one battle after another. In the beginning it was a lot of major medical stuff. An extended stay in the hospital, half of which was spent in the NICU. Then a surgery at 2 days old, another at 4 months, and open heart surgery at 6 months. All the while we were juggling with oxygen tanks and feeding tubes and apnea monitors and doctor visits once, twice, three times a week. Then throwing in just as many therapy visits each week as well. Needless to say, I had my hands full. I had begun to prepare myself that this baby #3 that I've always wanted, might not be something that I could handle on top of an already full plate. But then Sophia turned 3 and she started to eat! It was one of the best milestones she had accomplished. It was such a weight off of my shoulders. It kind of felt like we had won the final battle that we had been fighting since the day she was born. It felt amazing! It was after that I decided I didn't want to give up on my dream of having another baby, and so that is just what we did. And I am so glad I didn't give up on that dream, because our new baby girl, she completes this family perfectly.
I am so blessed to say that I have three amazingly, wonderful, perfect little girls that I love and adore. And most importantly, they are all happy, usually, and healthy! Having a healthy baby was my biggest fear this time around. I was terrified that I wouldn't get to bring my baby home right away. I would worry myself sick a lot of days thinking about all of the what if's. I didn't want to go down that road again. I mean, I would go down that road again if I had to, but I really didn't want to. And it scared me, through my whole pregnancy. I wasn't worried about having another child with Down syndrome or anything like that, I was just worried about having a sick baby. I am blessed that all of Sophia's health issues were treatable. But my eyes have been opened to so much more now and worrying, well that's just what I do.
Transitioning from two kids to three, had me a little nervous, but I have to say it hasn't really been all that bad, yet. My biggest struggle right now is just trying to keep overly loving hands off of the baby. Someone is always wanting to play, hold, pinch or scratch the baby, at all times. Poor thing can never have a moment of peace. And because I don't fully trust all of the little hands that are trying to love on the baby, I don't get a moment of peace either. But most of all, both of the girls have accepted having another sister wonderfully. They both love her to pieces and can be quite helpful when they want to be. I have to say, baby girl is a perfect fit.
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