New Video Series!

Signing with Diana (& Charlie!) 

Welcome to my blog/vlog! Nice to have you here. I want to provide some basic sign language for the general public, parents, teachers, anyone who could use the words to communicate with a fellow student in public school who happens to speak sign language and has trouble articulating words verbally. I hope my video series helps you speak to my son, Charlie! He will be a friend for life and will appreciate your efforts, I guarantee it! Warning: he might hug and kiss you for being so thoughtful and reaching out to him! I appreciate your interest and willingness to get to know my youngest in "his" own language. I've been to foreign countries, like France and Germany, surrounded by others speaking another language. It was hard and isolating until I picked up their language. The joy and freedom it brought to me to speak to people in their own language is wonderful. I feel that children will beam with pride in having learned some sign language to speak to a friend in class. Learning something new is always terrific, but watching an otherwise lonely person liven up after finally being understood, would be priceless! 

Thanks again! Happy signing :) 

2016 Buddy Walk on October 15th! Come join us!

Help us support the Partnership for Down's Syndrome in North Texas again this year! We are walking in the BUDDY WALK on October 15, 2016-- Charlie's 7th year!! 

http://ntbw.ezeventsolutions.com/CharliesAngels Just click this link and sign up! 

We can't wait to gather with the area folks who have Down's syndrome and their families and friends, including Charlie's school --TCU Kinderfrogs! We hope you can join us and/or send a few dollars to help a wonderful cause!  

Meanwhile, "Keep calm and smile on" ---Charlie's motto! Hope you enjoy a few fun photos taken this year of our little guy -- at home and out and about!

THANK YOU for being a CHARLIE'S ANGEL!

Charlie and his dog, Waffles. 

Charlie dressed like a Fort Worth boy, that he is!

Charlie and Mommy in a gondola above the Germany countryside. 

Charlie posing with the blue lion in Germany.

Charlie and Mommy selfie in Germany.

Charlie with his favorite animal at the zoo, the gorilla!

Gorgeous flowers by the Rhine River in Germany.

My new children's book is coming!

In the works for the past five years, I've written a sweet story of love, compassion and above all, hope. I was inspired by true events in my life and felt compelled to share my story in the form of a beautiful children's book. My heroine "Lauren", named after my only niece, is a young lady who develops a special bond with a seemingly hopeless black lab. Beautifully illustrated in watercolor by North Texas college student and professional artist/illustrator, Duoc Le, the story comes to life in heart-melting images and striking colors. In a fast-paced, busy, sometimes, heartless world, it's good to remind our little ones to stop and help those in need when possible. "Finding Hope" is just that. It's teaching compassion and how even a small child can make a difference in someone or something's life. I'm excited to roll out the finished book by April 2016! #FindingHopeBook 

Here's the Buddy Walk info at a glance for Oct 24, 2015:
North Texas Buddy Walk
Saturday, October 24, 201510:00 a.m. - 1:00 p.m.
University of Texas at Arlington

Click on this link to sign up to walk on the 
CHARLIE'S ANGELS team! http://www.ezeventsolutions.com/fr/NTBW/2015BuddyWalk/CharliesAngels

Let's Walk Again Angels!

It's 2015, and time to walk in our SIXTH Buddy Walk together! Please join us to be on Charlie's Angels team!

For our new Angels out there, here's a recap of who our little Charlie-man is! :)

Harrison Charles Brandenberg "Charlie" was born on July 28, 2010 in Fort Worth at the crack of dawn. We did not know our sweet boy had Down's syndrome (DS) in the first moments of his life. He looked perfectly healthy and appeared very alert. It wasn't until I was given my 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. Totally in love, I was already extremely protective. 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. They told me it was like he was jogging while eating.

The heart defects are pretty typical of babies with Down's syndrome. In some babies/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 as they develop and get older --mainly with breathing, fatigue and generally slow development. Charlie needed to have surgery to repair his holes in his heart. 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 worried that 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 (in addition to our rockstar boy!) 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 does get 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. The scar line on 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. Here's the story on that unfortunate experience: In January of  2012, right after a beautiful Christmas and New Year-- Charlie got a stomach bug. This stomach bug lasted 4 days. 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. 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. 

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. 

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. Thank goodness, all of those medical issues are long behind us! He hasn't had any problems medically since 2012! 

Charlie blows me away with his strength, confidence, abilities, perseverance and most of all his bright smile and wonderful 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. 

Charlie's back and STRONGER than ever! 

So, now Charlie is FIVE and ready to WALK in his SIXTH Buddy Walk! 

Please come and join us! 

And if you come to the Buddy Walk, give your little neighbor a fist bump or a high five! 

He will give you the biggest smile and leave you with an unforgettable sense of joy!

~ Diana

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