Tuesday, October 27, 2015

10 Guarantees In the Hospital

It's good to be back here on my blog after a short break. If you read my last post, you may be wondering how my daughter is doing. She is great! She has made a full recovery from the pneumonia in both of her lungs. We have enjoyed being back home. I have rested and am ready for life to get back to normal.

That week in the hospital was strangely familiar to some of Jaycee's other admissions. I have become accustomed to how our hospital works and what to expect with Jaycee's admissions. While in the hospital, I have brief encounters with other parents. Some parents have spent significantly more time in the hospital than me. Others are clearly first timers. It got me thinking about how much I have learned about hospitals in the past 9 years. Most of our hospital admissions have been at St Louis Children's Hospital for respiratory issues. Certainly, experiences vary from hospital to hospital and for an individual patients needs. If you are relatively new to hospital life or will be going in to the hospital with your child soon, then read these to discover what it's like to be in the hospital.

1. I can guarantee you, sleeping will be difficult for you and your child.
In our hospital, only one parent is allowed to stay in the child's room. Sleeping options are a couch, a chair that folds out for sleeping, or the worst possible scenario-a regular chair. Besides the less than ideal sleeping options, there's the fact that the room is never totally dark, there's often people in and out of the room, and there are beeps from monitors and IVs. If you have a roommate, then it's even harder because there's twice the noise.

The other parent who can't sleep in the room gets to sleep in the parent lounge. This person doesn't have it any better. Due to problems with theft, the parent lounge is lit up all night. (Yes, isn't it awful you have to worry about theft while your child is sick?) The light really bothers me unless I'm just exhausted. Usually, the sleeping options out in the lounge are couches and sleeper chairs. The parent lounge is filled with other tired parents snoring, watching tablets, or talking on the phone. Neither sleeping option is great, but I tend to sleep better in the room with Jaycee. I have started taking Tylenol pm in the hospital to help me drown out some of the background noise. I have learned to be thankful for whatever sleep that I actually do get. Obviously, the best way to get sleep is to go to a hotel, but that isn't always a good option financially or for the child.

2. Things are done on the hospital's schedule, not on yours.
I use to get so angry when my child's P.M. medications were given at 9 at night after she had fallen asleep. I didn't see why the medication couldn't be given at her normal times. I would tell the nurse she got her medications at 6 am and 5 pm, which didn't seem to make a difference to them. After several admissions, I finally discovered that if a child gets a medication twice a day, then it is given once on the morning shift and once on the evening shift. Things are done on the hospital's staff schedule. You must adapt to it.

3. Some things are done at inconvenient times at the hospital.
Labs at 4 am sound reasonable right? Just when you go back to sleep, how about an X-ray at 5 am? I use to get so annoyed with these, but I learned it was done in part so that the doctors could have all this information for morning rounds.

How about a bath at 4 am? Sure, why not? It's a common practice in the ICU for us. I learned baths are typically done during night shift in the ICU because they generally have more down time than day shift. It may not make sense to you on why things are happening when, but I am sure there is a good reason for it.

4. Your child's skin will most likely leave bruised, irritated, or with small scabs.
Pretty much every admission for Jaycee has involved blood work, a nasal swab for viruses, and an IV. Jaycee is not an easy stick, and I'm well aware that even the best nurse can miss more than once with Jaycee. This results in bruises, sometimes many of them. In the ICU, the doctors generally like to have more than one IV line for Jaycee. To get 2 IV lines, multiple sticks may be necessary. Then things get worse when there's PICC lines, central lines (like the one in her neck in this picture), and arterial lines which will all leave small scabs and sometimes scars. Add to that tape (see picture) and stickers for leads and Jaycee's skin can get very raw and red.



5. Care is only intensive in you are in the Intensive Care Unit.
I use to think that Jaycee being in the hospital at all was cause for extreme monitoring and frequent checks from the nurses. I learned that a child in the hospital doesn't need monitored 24/7, unless they are in the ICU. A monitor may beep for several minutes with no one rushing in to your child's room. You may push your nurse call light button and no one may come for what seems like ages. But here's what I have learned: the nurses are busy. They are taking care of many people. They know which patient needs more intensive care. If you are not being checked by a nurse often that probably means your child is getting better. It's a good sign. But, it could be a sign that your nurse is terrible, so ya know!

Now, in the intensive care unit. It's different. The sickest kids will get 1 nurse assigned to them for a 1 to 1 ratio. When Jaycee had several IV lines, needed constant monitoring, and was on a ventilator, she received her own nurse. As she got better, she shared a nurse with another child. The care is intensive in the ICU. There's always a nurse (and usually a doctor) around to grab for any concern or need. Being in the ICU is really nothing like being on a regular unit in a hospital.

6. Opportunities to see the doctor are few.
This may vary from hospital to hospital. But at our hospital, the interactions with the doctors are limited. A doctor will usually come in early before rounds to check on Jaycee. We always try to be at rounds because that's when the doctors are present to report about Jaycee's progress and plan. That's the best time to ask questions and share any concerns because it may be the last time you see the doctor that day. If there's a change for the worse, then the doctors will make a sudden appearance. But, the doctors aren't just hanging around checking in frequently. This is the difference between the floor and the ICU. The ICU always has doctors around. They are close by because kids in the ICU are more prone to needing immediate attention. We usually have short chats with the doctors 3 or more times a day in the ICU, which is extremely helpful when things aren't going well.

7. It is to your benefit to be kind to the nurses.
Because you have limited interactions with the doctors, the nurses are crucial to your child. For the most part, we have had very caring, knowledgeable, and efficient nurses. Once in awhile, there's a nurse that just messes things up or doesn't know how to care for your child properly. But, I try to give nurses the benefit of the doubt. I know they are busy, work long hours, and have many responsibilities. They may make mistakes. If they aren't major ones, just let it go. Smile at the nurses. Ask them how their day is. Don't call them in the room for every little thing. Respect their time. I have "befriended" many respiratory therapists and nurses that have allowed me to get new information about Jaycee. There have been some burning questions I have had about Jaycee that I finally got brave enough to ask through some chats with nurses. Nurses that have worked their specialty for years are very knowledge. They are great people to ask questions to.

8. There are many rules at the hospital designed to keep the patients safe.
Our hospital has rules about the number of visitors at one time and restrictions on children visitors. At our hospital, siblings can visit but no other children can. Sometimes it's a frustrating rule, but it's a good one. There doesn't need to be a room full of child visitors bringing in their own germs and being loud for other patients. But, this is a rule I see first timers struggle with. Another rule first timers have difficulty with are those for children admitted with a virus who are in isolation. When your child is isolation, they cannot leave their room or the unit. Yes, it can be boring, but it's for the safety of the immune-compromised children.

9. Discharge is not immediate.
The first few times I was told Jaycee was being discharged from the hospital, I started packing up our belongings and was ready to go. Little did I know, I would sit there for hours before we would actually get to leave. Prescriptions needed to be wrote, discharge papers had to be signed, medications needed to be relabeled, and follow up appointments needed to be scheduled all before we could go home. It seems like this should be done quickly right? Not most of the time. If Jaycee and I actually leave the hospital before 1 pm, I consider it a "quick" discharge.

10. This is the most important one... The sooner you accept the way things are at hospitals, you will be happier.
It's easy for a sleepy and stressed parent to get frustrated and upset about little things that happen in the hospital! The sooner you learn how things are and give up your idea of how things should be, it will decrease your stress. Your child's recovery is the number one thing you should focus on. Let all the little stuff go. Sleep when you can. Take breaks when you can. Ask questions when you can. And just be thankful for day you leave that place.

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Monday, October 12, 2015

31 for 21: I'm quitting.

An alarm beeps.
A iv pump hums.
The sound of a bipap giving breath never stops.
My daughter lays in ICU very sick with a respiratory issue.
Jaycee screams for "mama" as she is suctioned.
And I'm reminded how your life can change in an instant.


I had plans this month.
Down syndrome awareness month is important to me because of Jaycee.
I know how scared I was when the words "Down syndrome" hung in the air from a doctor.
I didnt know what challenges we would face and what life would be.
NIne years later, I know.
I know how hard some days are but I know the joy, the love, the happiness you feel when you open your heart to someone like Jaycee.
I know how love has more meaning when there's more chromosomes present.
And I know there are people everyday who are scared to take on a baby with Down syndrome.
And so I write, I advocate, I tell our stories, I try to tell people they can do this!

And I sign up to blog for 31 days in October for Down syndrome to raise awareness.
And now I quit on day 12.
Jaycee is in ICU and she needs me.
Raising awareness is important but nothing is as important as my daughter.
So as I officially quit this blog challenge, I wish you could sit in this hospital room, see what I see, feel what I feel for Jaycee and then blogs like this wouldnt be needed, because you would understand how powerful love is.
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Sunday, October 11, 2015

31 for 21: Taking Courage


Blogging 31 days for Trisomy 21 for Down syndrome Awareness Month Continues with Share a Scripture Sunday.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and let your heart take courage; Yes, wait for the Lord.     Psalms 27:13-14


This is a scripture that I often read when Jaycee is in the hospital. Jaycee's Down syndrome has never been the "hardest" part of our lives. Hands down, the most difficult part has been seeing Jaycee struggle with medical conditions that affects her daily life. Her asthma, obstructive sleep apnea, lung cyst, poor cough response, and heart history combine to make a simple cold very dangerous.

When Jaycee is at home wheezing and struggling to breath, I want to despair. When Jaycee gets worse and has to go into the hospital, I really want to despair. When she ends up in the ICU, well you know how I feel.

It's hard to live through those things once, twice, three times, and then more times than you can remember. That's why I need to read passages like this and remind myself to wait, be strong, and take courage.

Sometimes, I have to reach out and take the courage, it doesn't just come to me. I have to choose it and take it. Trust me, it's better to face obstacles with courage.

If you are facing something in life that makes you despair and doubt God's goodness, don't give up. Take courage today!

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Saturday, October 10, 2015

31 for 21: Sibling Relationships

Happy Sibling Saturday for #31for21!
 
 
Jaycee and her Down syndrome journey is the focus of much of my writing. But, her relationship with her brother is an important piece to mention too.
 
 
Jaycee is three years older than her little brother, Elijah. They are typical siblings in many ways. But, their relationship is different in a good way. They really like to spend time together. They spend way more time together than I ever did with my older brother. They watch tv together, sit in chairs together, and play outside together. They attend the same school, which means they ride the same bus to the same place. They often sit together on the bus.
 
 
Last week, I took Jaycee to the doctor. Throughout the day, Jaycee asked me several times where her "Bubba" was. That same day, Elijah had to go to school without his sister. As soon as he woke up, he said he didn't want to go to school without Jaycee. He didn't want to ride the bus without her. He didn't want to be picked up from school without her. He wanted her there.
 
 
I like that my kids like each other. They have their moments of fighting, but overall they truly are happy siblings. 
 
 
 
Elijah holding Jaycee's cup while she gets a drink after a long day. This was not a staged photo!

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Friday, October 9, 2015

31 for 21: Packing Up

31 for 21 challenge continues with photo Friday. Here's a picture and the story behind it.


 
Question. How many nights do you think I packed for Jaycee and I in this picture? 
 
Answer: 2 nights
 
 
The plastic bag on the table held snacks, distilled water for the bi-pap, and toys for our trip. The green cooler bag had juice and her medication that needed to be refridgerated. The red bag is the diaper bag used for public outings during the day. The small black bag directly in front of the red bag is Jaycee's bi-pap. The taller black suitcase is Jaycee's vest airway clearance machine. The purple suitcase had Jaycee's clothes, the nebulizer, and night time diapers. Finally, the navy blue bag had my clothes.
 
Question: How did I get all these bags in to the hotel with Jaycee?
 
Answer: Not very quickly or easily. Ha!

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Thursday, October 8, 2015

31 for 21: When Your Child Wears A Bi-Pap


Welcome to Throwback blog Thursday for Down syndrome Awareness Month, which is a repost of a previous entry.




When your child wears a Bi-pap....
...there are certain things you can and cannot do. The other day I realized that Jaycee has worn a c-pap or a bi-pap for most of her life now due to obstructive sleep apnea. For the last 4 years, Jaycee and I have had this love/hate relationship with her machine. She hates wearing it. I hate making her wear it. But, it's helping her breathe better at night, so we must do it. She's gotten more accustomed to her bi-pap over the years but some nights it's still a struggle to get it on perfectly (with no air leaks) and to keep it on her.

Here are some ways your life as a parent is affected when your child wears a bi-pap:

-There are no more spontaneous sleepovers. If you are at grandma's house late in the night, you cannot all of a sudden decide to let your child spend the night. There isn't an extra bi-pap laying around their house for her.

-If your child wants to spend the night somewhere, the temporary caregiver must be trained on how to use the bi-pap. Honestly, who wants to do this!? Apparently just my mom, since that's the only person she's ever stayed.

-When you travel, you have to pack your machine up in a little bag. You also have to make sure you have distilled water to put into it.

-If you go on a rare date with your spouse, the date must end early before your child might fall asleep. You have to be home to put your child on their bi-pap.

-There is no more of your child cuddling in bed with you and sleeping there a few hours. They can't because if they do, they won't be able to breathe safely.

-Mom (or sometimes dad) cannot go to bed until the child is on their bi-pap and fast asleep. There's no more coming in late and everyone settling into bed at the same time at my house. In our case, we put the bi-pap on after she's fallen asleep, which can take 20-60 minutes.

-You have to make space in your child's bedroom for the bi-pap. Since it uses water, the space has to be "safe" from falls.

-You have to clean the parts weekly and remember when it's time to reorder new parts.

-You must memorize your child's bi-pap settings or write them down and carry it with you. If your child is in the hospital, you will have to know this information.
 
 
***UPDATE: Jaycee has now used her machine for 6 years and no longer hates her bi-pap! I think she knows she rests better with it. For the first year or two on it, I dreamed of the day that Jaycee would no longer need it. I have resigned to the fact that Jaycee is probably going to need it forever.

Obstructive sleep apnea is common with Down syndrome due to the low muscle tone and smaller airways. Often removing the tonsils and adenoids will help. In Jaycee's case, it didn't.
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Wednesday, October 7, 2015

31 for 21: Jaycee "Says" Some Funny Stuff

Happy Witty Wednesday! Today, I will attempt to be humorous in my 31 days of blogging for Trisomy 21 challenge.

Though my daughter is minimally verbal, she still communicates. She uses a few words, novel gestures, sign language, and her speech generating communication device. Like any child, Jaycee sometimes "says" some funny things. Here's a few things that stick out to me:

  • When Jaycee was in pre-school, I would ask her "Do you have any pets?"  Instead of saying no, Jaycee said on her talker, "Wonder Pets."
  • If I'm telling a story and get too loud, Jaycee will sign "Mommy mad." For mad, Jaycee will put her hands on hips and do a sigh. It's super cute.
  • We have a family friend named Rusty. When Jaycee was little, she started signing "Thirsty" whenever she saw Rusty. To this day, Rusty is still "Thirsty" to Jaycee.
  • We were at a party once and Jaycee was stuffing her face with the yummy cake. The person who made the cake asked Jaycee if she liked it. Jaycee answered on her device "awful" and continued to eat the cake as fast as she could. (I was embarrassed.)
  • Sometimes Elijah doesn't want to eat his dinner, so he gets in trouble. Jaycee will often say using her talker, "Elijah time out."
  • Jaycee loves the name Rachael and uses the Rachael name sign from the "Signing Time" DVD series. There have been several times when Jaycee has met a baby, a woman, or an animal and asked me if their name was "Rachael." Or sometimes she'll continue to call someone Rachael even if she knows it's not right.
  • We ate at Cracker Barrel for breakfast one morning. I don't remember what Jaycee was eating, but I had white gravy with my breakfast. Jaycee kept eyeing my gravy and wanted a bite. She kept signing "mashed potatoes" for the gravy. After she ate most of my gravy, she remarked that those mashed potatoes were "delicious."
  • At Six Flags this summer, I rode with Jaycee on a swing ride that went extremely high. I was a little scared and may have screamed a few times. Jaycee laughed and enjoyed it. When my husband asked Jaycee how the ride was, she signed "Mommy was scared."
  • Sometimes, I will whisper in Jaycee's ear a little secret and tell her not to tell dad, who is sitting next to her. She will immediately lean over and whisper in dad's ear some babblings like "bababa dadada" and then smile at me. She loves doing that!

    Photo: A sentence Jaycee said on her talker

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Tuesday, October 6, 2015

31 for 21: Down syndrome & Physical Therapy

It's Tuesday, which means therapy talk for today's 31 for 21 blog.

Physical therapy has been part of Jaycee's life since she was an infant.

Let me be honest, when Jaycee was 2 months old, I wondered how physical therapy would be helpful. I understood she had Down syndrome. I knew that Down syndrome is associated with low muscle tone, which in turn makes the child very, very flexible. Because of this, developmental milestones are usually met much later. So, I consented to physical therapy not really knowing how it would be helpful when she was so tiny.

In one of her first physical therapy sessions, Jaycee was attempting to roll over. This being my first child, I thought she was doing well. The physical therapist pointed out that Jaycee was trying to roll over by hyperextending her neck (picture her chin being lifted up high). In other words, she wasn't using her muscles to roll over, she was using her flexibility to do an atypical movement.

She kept her neck hyperextended often when she was laying on the floor. Again, I thought this was what every baby did. Where did I put the toys with her neck hyperextended? Way up high where her eyes were, of course.

Jaycee's therapist, Glenna, showed me that hyperextension wasn't good, and I could help it stop by putting toys lower to force her to look down. I also was encouraged to put towel and blanket rolls behind her neck and head so that her chin would stay down toward her chest instead of up too far.

So a few sessions in to early intervention physical therapy, I realized that this was going to be very helpful for both Jaycee and myself.

Physical therapy has been instrumental in helping Jaycee learn motor movements and accomplish gross motor milestones such as running, jumping, and climbing stairs. Over the past few years, physical therapy has worked to build Jaycee's endurance and keep addressing her low muscle tone. Except for summer vacations or short breaks, Jaycee has essentially been in physical therapy since she was 2 months old.

Physical therapy has made a difference in Jaycee's life. I'm so glad we started early.



Jaycee doing a gross motor game at Special Olympics with her helper
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Monday, October 5, 2015

31 for 21: Using Her Talker

October is Down syndrome Awareness month AND augmentative and alternative communication (AAC) awareness month. So today's post will address both for a movie Monday treat.
 
 
Jaycee is 9 years old. Besides her Down syndrome, she has childhood apraxia of speech which makes it extremely difficult for her to speak. She has used a speech generating communication device for a few years now so that she can communicate with us. I love showing people Jaycee's device so they can learn about this different way of communicating.
 
 
This first video is just me doing an introduction of her device. 

 
 
 
video

 
This is a conversation I had with Jaycee using her device. 
 
video
 

 
Isn't she sweet?  AAC works!!

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Sunday, October 4, 2015

Why I Laugh

The 31 for 21 blog challenge for Down syndrome awareness month continues. Today is scripture Sunday.

Here's a scripture I have used in prayer often:

A merry heart does good, like medicine,
But a broken spirit dries the bones.
Proverbs 17:22

I have had many opportunities over the years to be upset. The challenge of taking care of a child with developmental delays and many health problems is sometimes very difficult. The post traumatic stress after one of Jaycee's hospital admissions is hard for me to put into words. There are times when my spirit feels broken. So I pray for myself. I pray that I will have a merry heart.

When Jaycee got out of the hospital this summer, I wisely asked for prayer from someone on the ministry team at church the first time I was able to attend church afterwards. My spirit was broken. I was worn out physically and emotionally from that hospital admission as I once again faced the idea that Jaycee's future wasn't guaranteed.

The prayer started out with me crying sobbing. And it ended with me laughing. I don't know why, but the prayer spoke to me. I did feel better. I felt like laughing, so I did. Immediately, the prayer partner said, "You keep on laughing! Satan thinks you have nothing to laugh about, so every time you laugh it confuses him."

Wow! I laugh all the time for no reason. I laugh when I'm nervous. I laugh at times when I'm mad. In the past couple of years, I have learned to smile and laugh as I'm trying unsuccessfully to get Jaycee to obey me in public while I'm screaming on the inside. I laugh a lot. People who know me have told me that I laugh easily.

Now, when I laugh, I have a new reason to keep laughing. It's my joy. It's my victory. It's part of my testimony. And it's medicine for my spirit.



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Saturday, October 3, 2015

My Son Explains Down syndrome

Welcome to day 3 of 31 for 21 & Sibling Saturday!

For the first time, I sat down and asked my son, Elijah, what he knew about Down syndrome and his sister. Elijah is 6 years old and has grown up with his big sister with Down syndrome.

Before reading this, you should also know that Jaycee has been admitted to the hospital 21 times mostly for respiratory issues related to her sleep apnea, lung cyst, and asthma. Jaycee's limited speech requires her to use a communication device that we call her talker. So his experience with Down syndrome isn't every sibling's experience with Down syndrome.

Here's our interview:

What is Down syndrome?
Jaycee has Down syndrome. It is someone who needs to be in a special class.

What are some problems Jaycee has?
She doesn't listen very good. She's had heart surgeries. She has to go to the doctor and the hospital.

What's the best thing about Jaycee?
She laughs at you mom when you scream on rides at Holiday World.  (He's right.)

Is there anything about Jaycee that bothers you?
She takes the Kindle away from me!!

What do you think abut Jaycee's medications and machines she needs everyday?
It helps her not to go to the hospital and get sick. I don't want her to go to the hospital.

Why do you think sissy gets sick?
She has heart problems, and she's had heart surgeries.

What's your favorite thing to do with Jaycee?
We play mostly. I'd like to teach her to ride a bike. I can ride mine, but she can't ride hers yet.

Do people with Down syndrome look different?
Yes. They don't talk as much as people that don't have Down syndrome. I don't use a talker and Jaycee does. She also wears glasses, so that's different.





My son is sweet. Obviously, his perspective of Down syndrome is based on his sister with a combination of health problems that aren't typical for Down syndrome. I found it interesting that he doesn't "see" the traits of Down syndrome on her body yet.

There are things I need to teach him about Down syndrome, but there are some things that I am glad he doesn't yet know.

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Friday, October 2, 2015

31 for 21: When the School Did Something Awesome

Today is the 2nd day of 31 for 21 challenge where we blog about Trisomy 21 for all 31 days of Down syndrome awareness month.
 
Happy Photo Friday everyone!! Here's a photo, well 2 actually, and the story behind it.
 
 
This is Jaycee leaving the hospital in 2013 after a 4 week, very intensive hospital admission. See blog posts from October 2013 for more information on that stay. Due to the illness and recovery, Jaycee missed about 6 weeks of school.
 
When I thought she was ready, Jaycee started back to school for a few hours in the middle of the day working her way towards full time.
 


When I arrived at school with Jaycee the first day back of her shortened schedule, I immediately saw this sign on the entrance of the school. I was so happy to see this sign giving Jaycee a special welcome back.

But that wasn't all the school had planned. The student body was notified the moment Jaycee arrived. I walked Jaycee outside the library to take her to the classroom building to find all the students lined up on both sides of the sidewalk. They were cheering for Jaycee and welcoming her back. It was beyond amazing. And maybe this tough momma shed a few tears.

 Dahlgren Grade School showed me that day that Jaycee was important to their school. It was something I'll never forget!
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Thursday, October 1, 2015

31 for 21 & Down Syndrome Awareness Month Begins!

It's October! Maybe you are thinking about fall and pumpkins, but our family gets excited for Down syndrome awareness month.  Once again, I will be participating in the 31 for 21 blog challenge, which is blogging all 31 days in October for Trisomy 21 (AKA Down syndrome).

Like last year, I have a theme for every day of the week. Today is Thursday, which is Throwback Blog Thursday. Here's a repost of one of my favorite blogs.

Down syndrome Questions

October is national Down syndrome awareness month. You probably already know that Down syndrome occurs when there are 3 copies of chromosome 21 instead of just 2. But over the years, I have been asked all sorts of questions about Down syndrome. Here are a few of the more interesting ones:

Is there something wrong with you because you had a baby with Down syndrome?
No. Nothing is wrong with me. There is no medical reason as to why I had a baby with Down syndrome. It just occurs. I didn't do anything in the pregnancy to cause it. It's something that doesn't happen very often but could potentially happen to anyone. The chances of having a baby with Down syndrome increases with maternal age but the majority of babies with Down syndrome (80%) are born to women under 35. I was 25 years old when my daughter was born.

Isn't Down syndrome hereditary?
Down syndrome is a genetic condition because it involves the DNA. Genetic and hereditary are not the same thing. There are actually 3 types of Down syndrome. A rare type of Down syndrome that can occur could be due to a parent being a particular carrier, but this is a small percentage of people with Down syndrome. When I had my daughter, I was told that I had a 1% chance of it happening again. In general, Down syndrome is not hereditary.

How severe is your daughter's Down syndrome?
I get asked this once in awhile. There are no severity ratings with Down syndrome. You either have it or you don't. There is not a "mild case" of Down syndrome or a "severe case" of Down syndrome, although sometimes I hear parents saying this. There is much variability within individuals with Down syndrome. Think about your own children and the differences in their abilities. People with Down syndrome are no different. While some may have more significant delays than others, there are no severity ratings given. However, the intellectual disabilities (formerly called mental retardation) that people with Down syndrome have can be classified as mild-profound.

Is your daughter always happy?
No! She has a full range of emotions. Jaycee is a very happy and sweet girl. This is often said about people with Down syndrome. But, she has feelings just like everyone else. She gets scared when she hears loud noises. She signs "scared" when she sees tigers. She gets upset when I won't let her have seconds or thirds of food. She cries when her grandmas leave her (even though she sees them at least weekly). Jaycee gets excited when she sees her cousins. When she doesn't want to do something, she finds ways to let you know. She has likes and dislikes just like anyone else.


Come back tomorrow for more 31 for 21!
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