Oct 15 - Fifteen Facts You Need to Know about DS

15 (Surprising) Facts about Down Syndrome: 

October 15, 2013 
At age 25, a woman has a one in 1,250 risk for having a child with Down syndrome. The risk increases to one in 952 at age 30, to one in 378 at age 35, to one in 106 at age 40 and one in 35 at age 45. However, 80% of children born with Down syndrome are born to mothers under the age of 35. This is because most babies, in general, are born to younger women.

(webmd.com)

October 14, 2013
Today, many kids with Down syndrome go to school and enjoy many of the same activities as other kids their age. A few go on to college. Many transition to semi-independent living. Still others continue to live at home but are able to hold jobs, thus finding their own success in the community. 
(kidshealth.org)

October 13, 2013
Other medical conditions that may occur more frequently in kids with DS include thyroid problems, intestinal abnormalities, seizure disorders, respiratory problems, obesity, an increased susceptibility to infection, and a higher risk of childhood leukemia. 
(kidshealth.org)

October 12, 2013
At birth, kids with DS are usually of average size, but they tend to grow at a slower rate and remain smaller than their peers. For infants, low muscle tone (hypotonia) may contribute to sucking and feeding problems, as well as constipation and other digestive issues. Toddlers and older kids may have delays in speech and self-care skills like feeding, dressing, and toilet teaching.
(kidshealth.org)

October 11, 2013
A surprising fact is Down syndrome is not rare. About 1 in every 700 babies is born with Down syndrome and over 6000 babies are born with Down syndrome in the US each year. Currently, it is estimated that there are over 350,000 individuals with Down syndrome in the United States.
(ndss.org)

October 10, 2013
In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to the families of individuals with Down syndrome. 
(ndss.org)

October 9, 2013
Down syndrome is hereditary in approximately 1% of all instances.  In the other 99% of cases Down syndrome is completely random and the only known factor that increases the risk is the age of the mother (over 35).  Translocation is the only type of Down syndrome known to have hereditary link.  Translocation accounts for 3 to 4% of all cases of Down syndrome.  Of those, one third (or 1% of all cases of Down syndrome) are hereditary. 

(ndss.org)

October 8, 2013
While there is currently no way to prevent Down syndrome, mothers can take steps before and during pregnancy to have a healthy pregnancy. Steps include taking a daily multivitamin with folic acid (400 micrograms), not smoking, and not drinking alcohol during pregnancy.
(CDC web site)

October 7, 2013
People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.  

(National Down Syndrome Society web site)

October 6, 2013 
There are more than 400,000 people living with Down syndrome in the United States. 

(health.ninemsn.com)

October 5, 2013 
You might have some difficulty understanding what a person with Down's Syndrome is saying, but they are usually excellent communicators. Please listen carefully and give them time. Their understanding is usually much better than their speech. Some have a lot to say!

(health.ninemsn.com)

October 4, 2013

Down's syndrome is a Trisomy - meaning there are 3 copies, instead of 2, of any given chromosome. Medically, Down's syndrome is known as Trisomy 21 because it's the 21st chromosome that is affected; it's also the most common type of trisomy. Down's syndrome is not a disease.

(http://mdbeau.blogspot.com web site)

October 3, 2013

Many children with Down syndrome have health complications beyond the usual childhood illnesses. Approximately 40% of the children have congenital heart defects.

(National Association for Down's Syndrome web site)

October 2, 2013

Most children with Down syndrome have mild to moderate impairments but it is important to note that they are more like other children than they are different. Early Intervention services should be provided shortly after birth. These services should include physical, speech and developmental therapies. Most children attend their neighborhood schools, some in regular classes and others in special education classes. Some children have more significant needs and require a more specialized program.

(National Association for Down's syndrome)

October 1, 2013

The cause of Down syndrome is unknown. In a process called non-disjunction, the two copies of chromosome 21 fail to separate during formation of the egg, resulting in an egg with two copies of the chromosome. When this egg is fertilized, the resulting baby ends up with three copies of chromosome 21 in each of its cells. The cause of this non-disjunction remains unknown. 

(Global Down's Syndrome Foundation web site)

Facts about Charlie - our little Angel

In honor of my son Charlie and our Buddy Walk team, I'm going to post a FACTOID about Down's Syndrome every day starting October 1st (tomorrow) until we walk on the 19th!

I hope you will read them all and remember the amazing things that folks with Down's syndrome bring to our world.

But, today I'd like to share some interesting facts about my angel, the captain of our Buddy Walk team, Charlie's Angels: Charlie

Harrison Charles Brandenberg "Charlie" was born on July 28, 2010 early in the morning. We did not know our sweet baby had Down's syndrome in the first moments we knew him. He looked perfectly healthy and appeared very alert. It wasn't until I was given my wrapped up bundle of joy that I noticed he might have DS. In fact, I was the only one who saw it at first. I think it was mother's intuition and because some of the doctor's thought that it was a possibility since I was an "older" mom-- 38 years old.

I couldn't take my eyes off him. I was already very protective and in love with my little guy. I was worried in my heart of all the possible problems that he/we might encounter. As it turned out, he did have a heart defect discovered 2 days after his birth. This heart defect (known as ASD and aVSD -- basically translate to holes in the heart(atrial and ventricle) caused some issues with feeding and breathing. He wasn't able to keep up with the demands of feeding -- it would literally wear him out.

The heart defects are pretty typical of people or babies with Down's syndrome. In some people, the holes simply close up and cause no further problems with their development. However, some babies' holes in their hearts are too big to close and cause problems --mainly with breathing, fatigue and generally slow development. Charlie needed to have surgery to repair his holes. At the time the doctors told me about his heart condition, I was in complete shock and deeply saddened. I thought "holes? in his heart??" I thought it was a fatal problem. But the doctors assured me that he would get through this just fine. It was a truly difficult time for us. I was scared of his surgery and the outcome.

We were very lucky to have a "rockstar" of a surgeon at Cook's Children's hospital in Fort Worth, TX --as Charlie's doctor. His abilities as a Pediatric heart surgeon were sought after all over the country. So, in the realm of heart surgeries, they told us that his was "routine." That was incredible to hear. It was such a relief to know that it his problem would be "fixed!" It was still extremely difficult to go through the surgery however. No one fathoms seeing their 4 month old wheeled away in a red wagon to be operated on -- much less have an open-heart surgery. It was actually terrifying. I liken it to getting an arm amputated... it felt like a piece of me was being taken away. But the story gets better.

Charlie healed -- and he did fast and well! I couldn't believe how quickly a child could rebound from open heart surgery. Children are amazing. Charlie is amazing. I am so proud of him still. The line of his chest is a faint reminder of what he went through. But that is the only reminder of what he went through. He has a healthy heart today and can do anything he wants! We are infinitely grateful to the incredible skills of the surgeon and Charlie's amazing healing strength.

I'd like to say that Charlie's life from that point on was flawless and we just coasted along without any visits to the hospital. But not so, when one has Down's syndrome. He is being regularly seen by a variety of doctors to maintain a healthy life. We must make sure his hearing and sight are where they need to be -- so we have regular check ups in that area. Thyroid issues can creep up in folks with Down's syndrome, so we watch his levels. All is good there.

He also had something called hypotonia or low muscle tone. That can cause swallowing problems as well. Charlie had some swallowing issues for the first couple of years but currently does not! So we're happy about that. We used to have to add thickener to the liquids he drank --to help him swallow them better. We constantly have to check his swallowing with "swallow studies" at the hospital.

In past posts I had written about another major challenge Charlie had to endure -- Charlie's bout with Guillain Barre -- I'll repost it here:

In January of this year -(2012)-right after a beautiful Christmas and New Year-- Charlie got a stomach bug. This stomach bug lasted 4 days roughly. I noticed something strange though around day 4 -- he was acting weaker instead of stronger. Although the diarrhea had subsided, he was showing no improvement in his muscle strength. I took him to his pediatrician and he gave me antibiotic and sent me home. It was the "he's just weak after a bad stomach bug" diagnosis. So, I brought him home, worried yet hopeful he'd heal and this would be behind us. I really expected him to show improvement and not decline. I even posted on Facebook at the time that I thought my son Charlie was "regressing" and whether anyone had any advice. 

Charlie's arms and legs kept getting worse--he refused to do things he used to do. He didn't pull up in the crib anymore; he sat a lot and played on the floor. Previously, he was cruising around the furniture and that stopped altogether. He also had trouble picking up his sippy cup, and he had to move his mouth to his hand to feed himself--instead of moving his hand to his mouth.  Poor Charlie was crankier than usual too(he was normally happy and playful), he stopped scooting around on his bottom and even avoided scooting over to me--which was really odd to me. Still our sweet, sweet Charlie, he continued to show love and was fun, cute, and talkative. 

Around day 8, I was up at 3 am and then again 5 am that morning worrying about Charlie; researching his ailment online. I kept getting up thinking about him and his situation. Beside myself, knowing that he's getting worse, not better. I knew something had to be done soon. It was the final straw the next morning when I went into his room and peaked inside his crib and noticed he had slept through the night and didn't move an inch. The night before, I had covered him with a blanket and fully expected him to kick it off at some point, but he didn't.  I picked him up in tears and realized my poor little baby was drenched in sweat.  I was shaking as my "mommy-radar" went off like a siren in my head and we kicked it into high gear. I said "We're going to Cook's!!". 

At Cook's we got the red carpet treatment.  Charlie had an open heart surgery at 4 months old and they took care of him then. (Very well I might add -- and I was grateful for that). I remember getting Charlie in the car to go to Cook's and I was so confident in the decision and even excited because I knew we were on our way to "get help."  It was like going to the Wizard of Oz. I knew when we walked through the doors, they would step in and rescue him. They are very aware of the many issues kiddoes with Down's syndrome can have. Strangely, this disorder that Charlie had was not one of them. 

 

Charlie LOVES to read.. passing time in his hospital bed

After a battery of tests -- blood drawn, x-ray, MRI, and even a spinal tap -- they found what the problem was. The young ER doctor who was in charge of our case was the answer to my prayers. He did all the tests that I previously researched and knew could help us determine what was wrong. The night before, Brock and I researched what caused paralysis in limbs and one of the problems came from something called Guillain-barre syndrome, which can be determined by spinal tap only--testing the protein levels. Basically, this syndrome is a very rare reaction to his stomach bug. Something that afflicts 1 in 100,000 a year; mostly men in the 30-50 age range.  This reaction was actually Charlie's own body attacking itself. The antibodies from the virus were going crazy and destroying the nerve endings in Charlie's body, starting with his legs, moving to his arms and would gradually cause devastating debilitation of the rest of his body if not treated quickly. This disorder typically has a recovery time of 4 months to many years. 

Charlie meeting a nice stranger while on a walk in the red wagon

I was relieved that it was something he'd recover at all from but the whole thing was just mind-boggling as to why he was in this position at all. It was imperative that we get him on the proper medication to turn this thing around. I was in constant tears as you can imagine. First, I was relieved to "know" what was causing his rapid decline and second, that it was recoverable and lastly, extremely frightened to imagine what could happen if the drugs didn't properly help him. 

I met his neurologist soon after and discovered we were in for a long haul -- at the hospital for at least 4 months he said. He warned us that it would get much worse before it got better. Which means he would become more paralyzed and even lose his ability to breathe. He would have to be on a breathing machine.  The medication -- intravenous immunoglobulins (IVIg) -- was our miracle drug. He was hooked up to a drip for 4 hours each night for 5 nights. He showed improvement almost immediately. The drug was actually a blood product that overwhelmed the body with antibodies and "convinced" the body not to produce anymore--so hence, the destruction of the nerve endings ceased. We did however learn of another issue sweet Charlie would have to face when they did the MRI. 

Fortunately, the issue was less serious in comparison to the Guillain-barre. He would have to have surgery at Cook's for a spinal defect called a tethered cord. 

We have since had that surgery as well -- on June 28th, a month before his 2nd birthday -- to the day. He handled that surgery with spunk and humility. He was our hero again. 

---------

Charlie blows me away with his strength, confidence, abilities, perseverance and most of all his bright smile and happy personality. I'm still amazed at him when I look at him. I remind myself every single day when I see him run around the house, climb up stairs, feed himself, sign like a champ, read his books, laugh and smile, play with his toys and his brother Max and school friends... etc etc, I remind myself of how LUCKY and BLESSED we are. 

He's back and stronger than ever! 

So, now Charlie is three and ready to WALK in his FOURTH Buddy Walk! 

Please join us! Come over and give him a fist bump or a high five! He will give you joy and leave you with an unforgettable sense of joy. 

~ Diana

Christmas is around the corner... Let's get a jump on those cards!

So, today I'm on fire about doing my photography for the Holiday season. I hope to be hired by area families to do their Christmas card portraits. You know how hard it is to choose a photo for your holiday card and then you end up using some blurry or dark photo taken from your phone at the last minute! Well, that's where I come in.. I have a knack for taking some memorable shots in the short time I'm with people. I don't know what it is.. maybe it's my goofy personality that puts people at ease. Or maybe they're thinking, "Is she for real?" I don't know.. but I love seeing smiles turn into moments and those moments are masterpieces when caught on camera. Soooo, I've created a couple of sample Christmas/Holiday cards using my own photos of course, to entice prospective clients... hope they do the trick. I really WANT to get going on these holiday portrait mini-sessions. It's SO fun!

More details located on my photography blog: dianabrandenbergphotography.blogspot.com

That's all for now! xoxo!

Klevr design is not just clever

My family spends a lot of time together in the living room. Thanks to our 1920 style bungalow, we have small, quaint, and charming rooms that provide us with lots of time together in the same room. Our challenge has been "how to accommodate having space for children" among everything else. We knew when we had kids that our house would be somewhat taken over by them, but sometimes it's just crazy. Toys scattered underfoot, organization nightmares, too much stuff... you name it, I've experienced it in our small home.

I love the feeling that kids give a home though. I wouldn't think to isolate them in an "out-of-the-way" space "somewhere" in the house. I truly enjoy knowing what they're doing and being involved in their activities on and off -- in between my own, mommy to-do list.

So, enter the engineer husband, Brock. He has also had a genius streak that allows him to see things in an incredibly multi-dimensional way. He is a "spacial" expert really. I'm in awe with his skills and intelligence, but don't you dare tell him! :)

He recognized the dire need we had for a space to store and play with Legos. So he came up with the idea of the Lego table. This Lego table is beautiful and sturdy. It's a piece that you'll want to keep for generations -- to pass down to your future college student perhaps. Made of elegantly smooth birch wood, currently in a natural light brown (blonde) color (which will change as requests for color will come in) and gently sanded on the edges. Beyond the slick look of the contemporary piece is the multi-functionality of it. It's a coffee table AND a play table. Kids and parents will agree to the use of it. By day, when the kids are tucked away at school working hard, the table is sleek with a few books or magazines laying on top. While by evening or late afternoon, the boards are taken off and hung on the handy shelves (transforming the table is always a fun experience) -- and the kids take over! The Lego building contest begins. It's Lego heaven! Just take a look at the photos in this post.

For only $400, this table (made in Fort Worth TX, USA), is an incredible value -- because it could be considered a work of art or custom-made furniture. Brock's making limited quantities and to those special folks who jump on the deal early.

Click on Klevr.us for more information about purchasing Klevr furniture... or send me a comment or email with your question and I'll be happy to help!

Have fun shopping and don't forget to add this piece to your top 10 Holiday Gifts to get a 4 year old to a 12 year old!

This is a video of my son Max, hamming it up as a weatherman. I love his spontaneity and humor. He will definitely not be a shy guy. Hope you enjoy this little video!

Klevr.us -- Really nifty furniture trend

Perfect solution to kids and adults sharing space!

It's Buddy Walk time again! October 19th!

Hi there! We're excited to put on our running shoes again for our little hero, Charlie. Max, Daddy and Mommy are geared up to raise $3000 for the Buddy Walk in Fort Worth. 

I can't believe the year has flown by and we're walking in another Buddy Walk. It seems like yesterday I was writing about the 2012 Buddy Walk! 

Charlie is doing wonderfully well -- no surgeries, mystery diagnosis's, no sickness or pain! We are counting our blessings and enjoying life! 

Please consider donating to our team CHARLIE'S ANGELS -- just go to this link: https://secure.ezeventsolutions.com/fr/NTBW/2013BuddyWalk/CharliesAngels and donate to help us reach $3000 this year! We only at 18%.. but I think or rather, I KNOW we can do it! 

Thank you for being one of our angels.. xoxo! ~ Diana