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October Down Syndrome Awareness Facts- Day 2

October 2, 2020 by Dawn@cedarsstory.com 2 Comments

This is day #2 of my Facts about Down Syndrome to play my part in spreading awareness. I was quite surprised when I read this fact, that 1 in 700 pregnancies are, in fact, positive for Down Syndrome. Trisomy 21, Down Syndrome, is the most common genetic abnormality known. But wait, if 1 in 700 pregnancies result in Down Syndrome, why don’t we see more individuals with Down Syndrome in the general population? This piece of information is hard to swallow but it is likely because in most developed countries fear permeates and it has been estimated that between 60-90% of mothers who learn of a Down Syndrome diagnosis prenatally will terminate their pregnancies.

One of my greatest hopes is that by running this site, and spreading awareness of just how un-scary a Down Syndrome diagnosis is…maybe someday a mother will read something here that will encourage her to continue her pregnancy. Even if a mother feels she is ill-equipped to deal with a child who has special needs, there are a slew of parents who are willing to adopt and parent those children. Just click on and read these, a few that have been shared on this site about adoption.

Max & Jude: Down Syndrome Adoption

Choosing Wyatt

Peanut’s Forever Family

Though the diagnosis was scary at first, ours was a birth diagnosis, I know that I wouldn’t have it any other way. I purposely chose not to have any testing done during my pregnancy because I would not consider anything besides carrying my child to term, regardless of any diagnosis that testing would show. Cedar has been nothing short of the unexpected blessing we never knew we wanted, but wouldn’t give up for the world.

October Down Syndrome Awareness Month Facts DAY 1

October 1, 2020 by Dawn@cedarsstory.com 1 Comment

October is Down Syndrome Awareness month. This is a fact that I am not even sure I knew in October 2016. Here we are, October 2020, and I have learned so much in the last 3 years since the birth of my son, Cedar, that I plan to share a fact a day for the month of October. I wish I had known all of this information when Cedar was born, but since I did not, I will spread awareness so that others can learn what I didn’t know.

My hope is that by spreading awareness about what Down Syndrome is, and some of the facts about it, I will play one small part in eradicating some of the myths that are still out there.

Let’s get started (and be sure to come back every day this month for a new fact) These will also be shared on our Facebook page and Instagram as well.

Did you know that there are 3 types of Down Syndrome?

There are 3 types of Down Syndrome:

Trisomy 21: All copies of the 21^st chromosome are in triplicate (95% of cases)
Mosaic Down Syndrome: Only some of the person’s 21^st set of chromosomes are in triplicate and others are completely unaffected These cases have a tendency to exhibit fewer of the physical characteristics of Down Syndrome and often it can be difficult to tell, at first glance, that they have Down Syndrome. (1-2% of cases)
Translocation: Extra genetic material is attached to the 21^st chromosome but it may not be a full and separate chromosomal piece, it is kind of like a small hitchiker. This type can be hereditary but is the only type that is.

This is a picture of my son, Cedar. When we received his diagnosis we learned from a geneticist that he has a 3rd copy of his 21st chromosome. He has standard Trisomy 21 which means that throughout his entire body all of the 21st chromosomes have an extra copy. We lovingly refer to it as his super-power. The type of Trisomy 21 that he has does not mean that any of our other children carry any type of genetic predisposition to have children with Down Syndrome. In fact, other than my current age, if we had chosen to have another child after him there would have been no higher risk that we would have another child with Down Syndrome. Younger mothers who have a child with Down Syndrome that is the classic Trisomy 21 type do not carry any higher risk of having another child with Down Syndrome.

Down Syndrome and Covid 19 a recovery story

April 26, 2020 by Guest Post Leave a Comment

In early March 2020 when the first cases of Coronavirus and subsequent Covid19 were identified in my home state of Ohio, I began to feel concerned. We are a large family, but my biggest concern was for our youngest child, Cedar, who has Down syndrome. What I couldn’t find as the pandemic raged across the USA was any cases of individuals with Down Syndrome contracting Covid 19 and how it impacted them. Then I did hear of one, a fatality of an adult man with Down Syndrome from Covid 19 in South America and then one in New Jersey and just after that, this story, Max’s story of contracting Covid 19 and recovering from it as well. This is the story I will share, Max’s story of Down Syndrome and Covid 19 a recovery story written by his mom.

If you know of another family who has a child with Down Syndrome who has recovered from Coronavirus Covid-19 please have them contact us to be featured.

Covid 19 and Down Syndrome a sweet baby boy smiling

Max’s Story

Max was born on June 7, 2019. He is our second child; we have a daughter as well who was 19 months old when Max was born. We wanted the kids to be close in age and at 35 I felt like my clock was ticking. He came 3 weeks early which was a surprise to us, I expected a labor free birth as I was scheduled for a repeat C-section. Max’s down syndrome was no surprise, I had found out prenatally via amniocentesis at around 22 weeks pregnant.

Like many diagnosis stories, I had some good doctors that encouraged me about his diagnosis and some not so good doctors too.

Related Story: Blessed by Down Syndrome- A prenatal story

During my pregnancy I was referred to see an MFM and cardiologist for some additional ultrasounds to search for any “abnormalities” that come with having a down syndrome diagnosis. Fortunately, they found nothing and released me from their care. Max was born very healthy and only needed to be on oxygen for a short period in the nursery. After a few days in the hospital we left for home together.

Fast forward 9 months. The first cases of corona virus have been detected in the United States and it’s predicted to spread across the nation. My husband is a retail pharmacist and I work as an engineer in a manufacturing facility, at this point we both are still reporting to work. We are fortunate to have my mom live with us and care for the kids at home while we work. We jokingly refer to her as our “granny-nanny.”

As the corona virus was picking up speed, my mom was out of the country with my brother enjoying a much-deserved tropical vacation. My husband’s mom had come to help us with the kids while she was away. We started to joke they may get stuck at their Caribbean resort as the president began to shutdown overseas travel. Fortunately, they made it back to the US just before air travel is stopped and the state begins to shut down.

Approximately one week after her return is when we started to experience symptoms. My husband thought he had a sinus infection and experience a mild fever. My mom had a sore throat and some congestion. I had a slightly runny nose and thought it was from the swinging highs and lows of Ohio weather. I didn’t think much of the symptoms at that point. That weekend was March 21, our first world down syndrome day. I was excited for my local down syndrome group organization’s festivities, but they were cancelled due to the threat of the spreading virus. So, I put on my mismatched socks and we celebrated at home.

I noticed Max was fussy and tired that day, unusual for him. He developed a slight fever that evening. I also started to feel funny and realized I also was running a fever. I gave Max some Tylenol and took some myself and hoped we would feel better in the morning.

Things did not improve over the next few days. Max’s fever continued and he had a very mild cough, my fever lasted another day and then I started feeling very achy and fatigued. My mom was getting sicker too and in addition to the flu-like fatigue and aches also had chest pains. My husband had recovered by the time the weekend had passed and our 2-year-old never became ill.

That next Monday I stayed home from work and contacted my doctor for a tele-visit. He said I likely had the flu, to stay quarantined for at least 7 days, and sent a prescription into my local pharmacy for some cough medicine. He told me I did not meet the demographic to be tested for covid19. I also sent an e-mail to Max’s pediatrician to see if we should be concerned about his symptoms. Max’s fever was well controlled with Tylenol and after it kicked in, he was mostly back to his normal self but seemed extra tired.

His cough was nearly non-existent.

However, she called the next day and said to bring him in immediately. The plan was to test him for flu and if it came back negative, he would be tested for covid19.

Related Story: Coronavirus and Down Syndrome recovery of a 5 year old

Getting a covid19 test at this time was difficult. She explained she was able to get him a test because he has down syndrome and he had some mild breathing issues as a small baby (silent reflux caused him congestion that is now easily controlled with medication). I had taken that day off work because my mom was so ill, she could not watch the kids. I packed Max up and we went to the doctor. His flu results came back negative and so we went to our local drive-thru testing center for the test. They told us the results would be back in 5-7 days.

While waiting for the results we were to keep quarantined. My husband went on FMLA and I started working from home full time. This worked out well because my mom was sick so he could watch the kids. While my mom and I seemed to get sicker each day Max woke up fever free by Friday. We were very relieved! He was sick for approximately 5 days total. At this point mom and I were miserable, my mom having the worst of it. She equated the illness to what it feels like after you receive chemotherapy treatment (she had recovered from cancer a few years back).

I had never felt so tired and miserable from a cold in my adult life. After several more days I started to feel better but now had new symptoms, diarrhea and I lost my sense of smell and taste. My husband had also been complaining he could no longer taste or smell. We were surprised when watching the news one night and they revealed this was a new symptom of covid19. At this point we were almost certain Max’s test results would come back positive.

We waited and waited and waited for the test results. By day 8 I contacted the doctor to inquire about them. Apparently, what they did was sent them for a virus panel first and then once that panel came back negative, reflexed them to the covid19 testing. It would be another 5-7 days before we would receive results. She apologized and we continued to wait. On day 13 we received results; they were positive for covid19. By then we were all mostly recovered, my mom and I still fatigued from the long illness but on the mend.

We’re not certain where we got the virus. It could have been my mom bringing it back from vacation with her, but my brother who had traveled with her had no symptoms. My husband is in contact with plenty of sick people at the pharmacy he works at so perhaps he brought it home. Many people I worked with also had been ill so it could have been me. We were all very careful to wash our hands after returning home and throughout the day but at the onset of symptoms social distancing wasn’t being very well enforced. Regardless, we are very lucky to have recovered without hospitalization and I hope this story may give those with babies or young children, down syndrome or not, some peace of mind.

Kristen is 36-year-old mother of two who works as an engineer in Ohio. When not working she enjoys spending time with her family, doing crafts, and playing games

Down Syndrome and Constipation- Natural Remedies

January 27, 2020 by Dawn@cedarsstory.com 6 Comments

I learned pretty quickly that one of the issues that goes along with my son’s Down Syndrome diagnosis is constipation, luckily I have some natural remedies.

Yes, Down Syndrome constipation and natural remedies can help!

Let’s start with the why…why do children with Down Syndrome often have difficulty with constipation? Down Syndrome constipation and natural remedies can help. It all starts in the gut (pun intended). Your colon, also called your large intestine which “removes water, salt, and some nutrients forming stool. Muscles line the colon’s walls, squeezing its contents along.” -WebMD is a muscle. What we know of children with Down Syndrome is that they often have low muscle tone or hypotonia. You may not realize that this low muscle tone affects EVERY part of the body, internal and external. So, for the colon and it’s magic squeezing muscles…the effectiveness is not as, well, effective in our kiddos with Down Syndrome.

Okay, but what does this actually mean? When we eat food and it travels through the digestive tract, if the colon is doing its job, the waste from our food is sqeezed down the large intestine to the small intestine and out the back door. However, if the muscles are not working effectively what you see is waste matter that sits in the colon a bit longer than it should and the process mentioned above of removing water, salt, nutrients, etc continues. This removal of water means that the stool gets harder and harder (think of a grape turning to a raisin). Well, now that this stool is beyond firm and rather more like a hardened rock, it is EXTREMELY difficult to get out. Hence the crying, pushing, irritability and other signs you may see in your baby.

So, what is a mama to do? Most medical professionals are quick to push Miralax or other over the counter medications to help your little one go, but, you don’t want to create a reliance on medications or deal with the side effects unless absolutely necessary so I am always one to try natural remedies (okay totally exhaust natural remedies) first before turning to medicine.

Now, let me start by saying that medication is easier. It is, because you just give it and move on. However, I do not believe it is always better. It is often the road less traveled that is better, in this mom’s opinion.

I learned quickly that I had to be quite the scientific observationist when it came to poop. I had to keep close tabs on the poop to be sure that at the first sign of hardness or constipation, I was on it before we had a problem. That is how I was able to avoid using medications but this is something I STILL have to stay on top of. Being that my son is still in diapers it isn’t exactly rocket science, I mean I am looking in that diaper multiple times a day anyway.

My first suggestion…PRUNES.

My son started having difficulty with constipation around 4-5 months old. This is before I was giving him solids so we started with prune and pear juice. At the first sign of his poop getting a little too solid, I started in with 4-5 ounces of juice daily. Once he was older I began adding pureed prunes to his diet on a daily basis (you can mix them with apples, peaches, and other fruits to make them more palatable.)

Second Suggestion- Nix the Dairy

This one is REALLY hard. Especially if you are bottle feeding. However, often dairy causes gas, discomfort, and yes, constipation in babies. If you are nursing, try cutting out all cheese, milk, yogurt, and other dairy products for 3-5 days and see if there is a difference.

Third Suggestion- Greens

If your child is eating solids, get creative. I am a firm advocate for making your own baby food because you can modify the food based on what your child needs. If you need more “make you go food” add spinach, broccoli, and other green leafy’s into your child’s diet. You can quite cleverly disguise steamed broccoli in sweet potatoes or even apples if need be.

Fourth Suggestion- Ground flax

flax meal is a make you go quick kinda thing. You need ground flax though as whole flax seeds are not digested. Mix the flax in with food but be sure you are also offering LOTS of liquids as it does no good to up the fiber intake without plenty of fluids to help it all along.

Fifth suggestion- Coconut oil

Check with your pediatrician but many people find that coconut oil has a laxative effect on them. You can warm the coconut oil up (it melts at approx 76 degrees) and add to a bottle or food starting with 2 tsp a day and working up if need be.

Try some of these natural remedies and see if, when you stay on top of the situation, you aren’t also able to use natural remedies to control constipation in your kiddo.

There are a few other great sites around the web that offer even more suggestions, check them out here, here and here.

Need to know more about Down Syndrome? Check out this 101 post that can tell you all you need to know.

Have you gotten your copy of our new Children’s book? You can check out the 40+ 5 star reviews on Amazon by clicking below. (Affiliate link)

A beautiful story highlighting a sunny day visit to the farm. The reader is invited into a whimsical tale with animals and children enjoying their adventures. What makes this story unique, however, is that each of the children photographed in the book has Down Syndrome. The storyline is appropriate for all children and clearly shows the abilities of children with an extra chromosome. 10% of the profits will be donated to various Down Syndrome organizations.

Getting Pregnant Again after Having a Baby with Down Syndrome

January 26, 2020 by Guest Post 2 Comments

Paige has been featured on the site before, her beautiful girl named Eden showed the world just how well a child with Down Syndrome can learn sign language. However, this time I asked Paige what many mamas have talked to me about…their fear of wanting another child after having a baby with Down Syndrome, How to handle the fear that they may have another child with special needs. So, Paige shares about getting pregnant again after already having a baby with Down Syndrome.

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