March 27, 2012

Still Oxygizing


We are still at the hospital with poor Baby Sam. On top of the pneumonia, his viral panel showed that he had Rhino virus (the common cold) and Metapneumovirus (apparently, the virus du jour for all discerning infant palates). While the pneumonia aspect seemed to be getting better by Saturday afternoon, the viruses have kind of a latent punch to them that doesn't kick in until day 4...also known as Sunday. So, we upped his oxygen, and started all over again.

By Monday, I finally got a smile out of him, and by this afternoon, he was acting like his normal, happy baby self. That is, unless any medical personnel in a face mask came near him...because that meant someone was going to suck out his nose or squirt sticky pink stuff in his mouth and he was OVER both of those things happening.

We are down to .25 liter of oxygen, which is hardly anything compared to where we started last Friday, so we are hoping for another good night and maybe a discharge on Thursday.

It's been a long week. Thanks for thinking of us and talking to God about us. He listened and we felt it.

March 23, 2012

Bemoaning Pneumonia

All day yesterday, Sam was super lethargic. Even when he was awake, he wanted nothing more than to be held on my chest. He refused to sit up for physical therapy, and generally was just a ball of limp baby all afternoon. By dinner time, he was running a fever. The fever plus the lethargy had me worried, so we were in touch with the doctor that night. He perked up some after the tylenol kicked in, so we made an appointment with our pediatrician for this morning. He slept most of the night, with coughing episodes every hour or so.

By this morning, he was still super sleepy, only eating a few ounces at a time, and wheezing. As I sat in the waiting room, I just knew this wasn't going to turn out well.

His oxygen levels were hanging out in the mid 80's, despite two different breathing treatments in the office. Our pediatrician heard some diminished breath sounds in one lung and got on the phone with the hospital pretty quickly. After it became evident that the Albuterol wasn't going to cut it, they put him on oxygen and the hospital doctor insisted that he come in by ambulance. 

Want know what's a really sad sight? A baby car seat strapped onto a gurney. Oof. 

I followed the ambulance through traffic to wind up once again at Levine Children's Hospital, where we spent most of October 2011. He was quickly admitted and the doctors and nurses started pouring in. Once they got him on oxygen, he didn't seem so sick anymore. He was still wheezing, but didn't seem to be in a lot of distress. Unless they made me lay him down. He was quite the little barnacle for those first few hours.
The doctors figured some type of respiratory virus, and started running tests to confirm. They eventually did a chest x-ray and discovered that he has pneumonia, a little in both lungs. They just started an IV to get some antibiotics going. We were already visited by some of our old CV ICU respiratory therapists and cardiac nurse practitioners. It's practically like Homecoming Week around here.

We aren't sure how long we will be in the hospital. It will once again depend his dependence to oxygen and how long it takes him to get weaned off it and breathing easy on his own. 

 He's actually been eating much better since we got to the hospital, almost doubling what he ate the entire day yesterday, so that is one less thing to be worrying about.

We are back on the progressive floor, so we have to be with him 24/7. It makes things a little tricky making sure Luke is covered, but I think we'll survive the weekend, at least. 

It was so hard walking those familiar paths through the parking garage and lobby, knowing exactly which floor to get off on and where to go without asking any body. Seeing the same security guard manning the elevators as was there 5 months ago. But within minutes of being there, I was able to relax, simply because when he needed to be held, I could hold him. No incision to worry about, no pacing wires to nervously avoid, no hesitation to pick him up and comfort him the way he wants to be. 
Thank God for that small blessing. 

March 21, 2012

3:21 Day 21!!

Check out Big Brother Luke sporting his 3:21 shirt in the NDSS video!
If you missed it, at 00:34, Luke makes his appearance!

Going to the preschool this morning was so amazing. All the kids were dressed in their yellow and blue, with homemade 3:21 ribbons pinned to their shirts. They loved seeing Baby Sam and would have kissed all over him if Travis would have let them. 
(Luke sat still for maybe 3 seconds of the whole 30 minutes we were there. He kept getting up mostly so that he could go raid the candy bowl that's on the desk in the office or get the maracas out of the choir room. It's totally not fair for the preschool that they have to handle the pastor's kid who has the whole building figured out!)



Sam was a champ throughout the whole time and Travis did a great job explaining to the kids about how Samuel is more like them than he is different. In fact, I'm not sure the kids knew he was different at all. Although, I did like the little girl who pointed out how much she liked his ears. I like them, too.

Happy World Down Syndrome Day!

*Pictures blurred intentionally. If I were a better photographer, I could have done this better, but I'm working with a pretty limited skill set here!

March 20, 2012

3:21 Day 20

If you haven't already placed the PicBadge on your Facebook profile yet, here's the link again so you can be ready for tomorrow! It's easy to place and easy to remove, so think about adding it just for tomorrow!

It's been so cool to see our friends and family add it to pictures these past few weeks. It's just another little reminder to me that you love my son and my family. Thank you. From the bottom of my heart.

Thanks so much for sticking with me through these last few weeks of blogging. I hope you've learned something about Down Syndrome...I know it's been so good for me to put my thoughts and feelings about this journey down in writing. This is just our beginning, I know that. But it's a good reminder to me for the years to come, when my brain gets overloaded with facts and theories and statistics.

Now, I've had a certain baby with Down Syndrome coughing on my chest for the last hour and a half and he's finally gone to sleep, so I'm going to follow his lead.

Thanks again for reading, for sending your kids to preschool tomorrow wearing yellow and blue, for adding a silly badge to your Facebook, for buying t-shirts for your kids, for commenting, for sharing facts about Down Syndrome with your world, for following our journey and uplifting us with your prayers and your thoughts and your support. It means more than I can say to us. You are amazing.

March 19, 2012

3:21 Day 19

Yeah! Only 2 more days until World Down Syndrome Day (...and the end of daily posting! Can you tell I've run out of things to write about??)!

We held off on putting Luke in preschool when he turned two because he wasn't potty trained. And while he's not fully there yet with nap times and overnight, he's doing pretty darn good with the whole thing now. So, when the preschool let us know there would be an opening for the last 6 weeks of this year, we jumped all over that. With his speech delays and high energy levels, school is just what I can't wait for he needs.

The preschool we are sending him to is located within our church, so he'll be down the hall from where Travis' office is located. It's going to make my life so much easier to just send them both out the door twice a week, and have a couple of mornings with just me and Sam.

Once a week, Travis and our music director have chapel for the kids where they sing songs and learn about a Bible story or lesson.This week, the preschool director let Travis know that they were going to celebrate World Down Syndrome Day at the school on Wednesday. All the kids are going to wear yellow and blue, and Samuel is going to make his first public appearance as an advocate for Down Syndrome Awareness during chapel.

It is so awesome to me that this school, that we aren't even enrolled in yet, has embraced my family and wants to help be our champion. Way to go, CIC Preschool!

For ideas about how you can help celebrate, as always...check out NDSS or DSI!

March 18, 2012

3:21 Day 18

It's been a busy Sunday for us today in the Norton household. Travis was at work for roughly 12 hours, Luke decided to wake up 2 hours early, and both boys have still been fighting off some bug that makes them cranky and unpredictable. Fun was had by all.

Sorry to send you to other places again, but there is just not any brain power left, my friends. I'm fried.Check out NDSS's page for things to do for WDSD.

One of my favorite things on that page is the Time's Square Video Montage. Check it out. It's so great to see the different faces of children, teens, and adults living with Down Syndrome.

We'll be back tomorrow with some more pictures and a few more posts to end my 21 days of blogging for World Down Syndrome Day, March 21st!

March 17, 2012

3:21 Day 17

After 17 days of reading about my experiences with Down Syndrome, I figure you are due for a different voice.  When I first started looking for other blogs, I read just about anything that turned up in a "Down Syndrome blog" search on Google. After a while, I got more choosy with which ones I subscribed to.

Here's a list of my favs. Go check them out and fall in love with their sweet kids.

1. Kelle Hampton-Doesn't specifically write about Down Syndrome all the time, but I am in love with her 2 year old daughter. Her pictures are gorgeous and it makes me want to go live on the beach again.

2.Noah's Dad-He's had some notoriety recently surrounding the article he wrote praising Target for using models with DS in their advertising. He also posts a daily video about what his son is up to.

3. Justin and Marla Michau- A husband and wife team that blog on their separate sites. I found them when I was trying to prepare myself for Sam's AVSD surgery. They posted daily updates about their daughter's stay in the hospital and I found it so helpful to read and see. Lovely photography from both of them.

4. Coopie Inc.- A little Down Syndrome Association of Charlotte shout out to Cooper and Jill who we haven't met in person yet, but have followed since we first joined the DSAC. She's also doing all sorts of stuff for World Down Syndrome Day through her blog

And lastly, the NDSS has a page with listings of bloggers who are writing about Down Syndrome and WDSD. Check it out.

Thanks for sticking with us for the last 17 days. Only 4 more to go! World Down Syndrome Day is March 21st!

March 16, 2012

3:21 Day 16

5 years ago today, my sweet boyfriend convinced me to stand on the (semi) frozen Seeley Lake and watch the sunset so that he could propose to me. 

(Spoiler alert: I said yes.)

We are heading out on a date in a little bit, so instead of a long post today, you just get pictures. It's been so warm lately, and I personally think the best part of warm weather is seeing all the baby chub on display. Don't you just want to gobble up his legs?! That is some Grade-A, all natural baby chub right there. Love it.

Have a good weekend! And don't forget to check out NDSS or DSI for more ideas about how to celebrate World Down Syndrome Day in your community!

March 15, 2012

3:21 Day 15

Samuel had physical therapy this afternoon. I love our therapist. She's obviously in love with Sam and has been very encouraging as we struggle to meet milestones. Sam has always had a very strong lower body, but his upper trunk and arms have been weaker, first naturally, and then delayed even further because of his open heart surgery. At 7 months old, he is just finally getting a supported sit, or a tripod sit, on his own. He can even do anywhere from 10-30 seconds of sitting on his own. Most of the time he gently list to one side until he falls over, but sometimes he can stay sitting up pretty straight for a long time. His arms are still his weakest link, so he has a hard time propping himself up when he is on his belly.

Our oldest, Luke, was a very physical baby. He held his head up early, he pushed away from us until we learned to spin him around to face the world, he loved to stand on his legs, even before he could sit up well. He's still ahead of the game when it comes to physical milestones. Earlier this week, when we had him evaluated for his speech delay, he tested 6 months ahead in gross motor skills.
Luke at 7 months. He'd been sitting on his own for a few weeks by then.
It can be so hard to not compare our two boys to one another. It's a natural instinct that I am trying hard to ignore. I know that it's pointless to even look at the "typical" infant physical milestone charts for Samuel, especially since Luke proved that they don't mean anything. 

But you want to know something that is incredibly frustrating about even Down Syndrome Milestone Charts? Here, go take a look at this one. I'll wait. Just to take a quick peek at something simple like "Stands Alone." The average age is 18 months, but it's the range that drives me insane. It says 12 to 38 months. That's an 26 month range for when it may or may not happen. A two year difference between early standers and late standers. 

I spoke earlier about just how different each child with Down Syndrome is from even other children with DS. There is a huge range in physical abilities, especially at these young ages. While I know that this aspect of our daily life with DS will change as Sam masters all these skills in his own time...right now, it is front and center. It's literally penciled into our days as we meet with therapists, as we consciously play with him in certain ways to stimulate development, as we find ways to help him tolerate being on his belly so that he can work on his upper body strength.

Who needs to sit by themselves when you have a Bumbo?!
P.S. I don't normally let him play with knives. But everyone needs to pull their weight in the kitchen, am I right?
I know that no child is predictable. Shoot, Luke has proven that to me over and over. First with his leap frogging over physical milestones, and most recently, with his lagging speech development. Not even everything about my "typical child" is typical.

It is just so hard to not stare at those charts, wondering and hoping and dreading. A few weeks ago, one of our therapists dropped off a printed copy of the milestone chart they use. I perused it and then laid it on the counter meaning to file it away at a later time. However, without doing so purposely, I placed it on the counter that runs behind my kitchen sink. So, for weeks, as I did dishes and washed bottles, I'd find myself glancing at it. Thinking about what it must be like to have a 6 year old in diapers. What it would be like to have to a 4 year old who didn't talk. How it worked to have a 3 year old crawler.

This was not a helpful habit, as I'm sure you can imagine. I finally got smart and filed it away in the big box full of things I will deal with when I have to. One thing at a time, right? Today, all I'm going to worry about is working on sitting and loving my sweet boy. The challenges of our tomorrows do not need me to worry them into existence.

Less than a week left until World Down Syndrome Day

March 14, 2012

3:21 Day 14

Today, Samuel and I went down to the Sanger Clinic to check in with our pediatric cardiologist. Sam is roughly 5 months post-op from his first surgery, and this is the second follow-up visit we've had. Normally, we could be done for a while and move on to just yearly check ups. However, while Samuel's valve repair seems to have gone beautifully and there is no discernible murmur, this ongoing battle he has with congestion is something they want to keep a close eye on. So, we'll head back in a few months to see if it was just cold and flu season bringing him down or if there is a bigger issue at work. We'll check in on his pacemaker at the end of the month to see what it's been up to the last few months, as well.

After our appointment, I sat in the waiting room trying to get Sam to finish a bottle before we got in the car. I knew he would fall asleep approximately 15 seconds after the car started moving and I was hoping for more than just a car nap. As I tried to get him to focus on eating, the chairs around us filled up with other patients waiting to be called. Since getting to the large Sanger Clinic down at the children's hospital involves a lot of traffic and dealing with the parking garage, we usually go to a satellite clinic that Sanger Pediatric sets up one day a week in a nearby town. They take over two rooms of a larger clinic that houses a variety of different doctors. Surrounding us in the waiting room were a mother and a her young daughter, an older couple with shaky arthritic hands and cardigans, and a middle age man. Quite the mixed crowd, and all staring at my baby.

As I sat there, wiping up his little dribbles and trying to keep him from bending over backwards so that he could check out everyone around him, I became really aware of how people were looking at him. We've rarely ventured out into places where the people surrounding us don't already know that Samuel has Down Syndrome. At church and doctor's offices, most of the time, we are with people who know. At Target or the grocery store, he's usually still strapped into his carseat and I'm so busying trying to keep Luke from catapulting from the cart that I rarely notice how people react to Sam.

He was extra noticeable today as he was about half an hour past due for his breathing treatment and he was extra wheezy. So, for the most part, I took their looks of concern at face value. "That poor baby. He can barely breath. Why does that crazy mother have him sitting next to me? Why is he in public?! I don't want to catch the bird flu!"
(Wait. Bird flu is kind of over, isn't it? Swine flu? H1N1? What's the latest rage in infectious diseases? I'm so out of the loop.)
I tried to smile and pat him vigorously on the back to show that I knew he was congested and that he was fine. I made him smile and laugh while I tucked him into his carseat to show that he wasn't this sickly baby who needed to be quarantined. I muttered under my breath about how I know it's time for your breathing treatment, sweetheart...we are almost home.

You talk to your kids for the benefit of strangers all the time, too, right? It's not just me.

But as I pulled out of the parking lot, and Sam's eyes got sleepy in the backseat, I wondered to myself, "What if they were looking at him because he has Down Syndrome? What if they knew? Was that why they were watching him so intently?"

When I look at Sam, I can see Down Syndrome all over his face. When he was born, that wasn't the case. All I saw was a sleepy, c-section perfect face. But the minute the doctor suggested it might be a possibility, I found myself studying his face, looking for traces of different. I still do it on some level. It's almost like if I can prove to myself that he doesn't look like he has Down Syndrome, then miraculously that extra chromosome will just disappear. People said to me all the time after he was born how they couldn't tell. Even the nurses who watched over him in the CVICU after his heart surgeries would say that without the diagnosis on the chart, they would have never known.

After a while, it was my least favorite thing to hear. It would make me so (internally) angry. Stop telling me that he doesn't look like he has it. He does. That's it. It doesn't matter if he looks like it or not, it's there and it's not going away. It wasn't helpful then, and it's not helpful now...but at least it doesn't make me (very) mad anymore.

Sam's world is small right now. He's very well insulated from people who are callus about his diagnosis and even if that were not the case, he wouldn't care. That's the joy of being an infant. And even I have only encountered one individual whose comments about Down Syndrome made me want to hit them over the head and shove them out of my house. I know this will not always be the case for Sam or for me. It is one of the reasons why I decided to write about WDSD, though. There is so much I didn't know about Down Syndrome 7 months ago. 5 months ago. 2 months ago. I've been learning so much and I just want you to know, too.

But more than anything, I just want you to love my son. My sons. Isn't that what we all want?

Check out NDSS or DSI for more information about World Down Syndrome Day, March 21st. Just one week left!

March 13, 2012

3:21 Day 13

Luke took a break from his busy morning of cutting the grass to model his 3:21 shirt for you. 
Even though Luke just has two 21st chromosomes, Down Syndrome is forever going to be part of his life, too. Right now, he is blissfully unaware of Down Syndrome and any of its effects on his little brother. He couldn't care less that Sam has an extra chromosome. 
I don't know what it's going to mean for Luke's life that his little brother has Down Syndrome.
 I do know that dimple and those brown eyes are going to cause a mess of trouble for me and a lot of teenage girls in about 10 years. It should be against the law for a preacher's kid to have dimples. 
This is what I hope for for my two boys: That they watch out for each other. That they love each other. That they build elaborate blanket forts in the living room and save the Earth from invading aliens in the backyard. That they have someone to commiserate with when they are frustrated that moms insist on taking baths and brushing their teeth. EVERY DAY. 
While I know that there isn't a magic wand I can wave over Luke and have him be okay with all the things that Down Syndrome will bring into his life, I do know that he loves his little brother. I think that will be enough to get him through all the rest.


Order your own 3:21 t-shirt here. Check out NDSS and DSI for more information about World Down Syndrome Day, March 21st!

March 12, 2012

3:21 Day 12

We interrupt your daily World Down Syndrome Day posting schedule to whine about my life a little. We'll get back to learning more about living with a child with DS tomorrow.

This morning, we had our oldest son, Luke, evaluated by our local Early Intervention program. Three nice ladies came by and tested him on a variety of skills, from fine/gross motor skills to speech and social skills. As we guessed, he passed all areas of development with flying colors, except language. And even in that category, he was age-appropriate for receptive language...meaning, he understands about 99% of what you tell him. However, he is lagging at least 6 months behind his peers in his expressive language...meaning, he can't really talk to you about what he wants, what he sees, or what he is frustrated about.

This is not unexpected news for us, but it is still sobering. While today was mainly focused on getting him evaluated, we won't really know what it will take to help him catch up until we start the weekly therapy sessions. I don't think this is going to be a huge deal in the grand scheme of Luke's life, but in the small picture of our day to day life, it is definitely a big deal in the here and now.

There are days when I feel I finally have a handle on what it means to be a mother of two kids. It's exhausting; demanding great patience, creativity, and humor. I know this now, and most days that is enough to help fuel me from breakfast to bed time. 

But learning that both my children will be in weekly therapy? 

Sometimes, I just wish we could catch a break.

Head over to NDSS and DSI to learn more about World Down Syndrome Day, March 21st.

March 11, 2012

3:21 Day 11

My sister posted this on Facebook tonight. 



I feel like I want my hour back. I think there should be an exemption clause from Daylight Savings for anyone who has a child at home under the age of like 8. It's made an already brutal Sunday schedule just about unbearable.
(Now I have a zillion lines from the Princess Bride running through my head. Anybody want a peanut?)

So today, I'm taking the easy way out and letting others raise your awareness of Down Syndrome today. Here are some videos to watch.




Good luck storming the castle!

March 10, 2012

3:21 Day 10

I've been thinking off and on all day about what I'm going to write, what I want you to know about Down Syndrome today. I've been on this journey now for 7 months. I am so far from being an expert on this condition that it can completely overwhelm me if I think about it too much. I've been relying heavily on my local DS association, the NDSS, and blogs of parents who've been down this road for information. In all my reading and conversations, the one that keeps coming up is this: You have no idea what your child is going to be capable of. Physically, mentally, socially. You have no idea what their life is going to be like.

But really, isn't that the truth for any child?

When my first born, Luke, was a tiny baby, I remember holding him and wondering what he was going to be like. I had no idea. Not about his personality, or his strength, or his intelligence, or his physicality. All I knew for certain was that he could cry and he could poop. Those were my only I-know-this-for-certain facts about Luke. And slowly, the last 2 and a half years have started to reveal who Luke is. He is smart and can undo any child lock known to man, but is delayed in speech. That he is strong and solid and runs with abandon. That he loves being around people and would personally greet every single person in Target if I would stop pushing the cart long enough to let him.

When I looked at Samuel, my beautiful baby boy, those first few months, it was so hard to not see the Down Syndrome first, and Samuel second. All I could focus on was his little gaped toes. His slanted eyes. His folded over ears. The thicker neck folds. The little line that ran across his hand. The doctors who were so concerned about his tiny heart.

But I'm getting to know Sam now. My sweet, smiley baby. He's ticklish under his ribs, but only if you tickle him with your nose. He loves when you lean in and kiss his cheeks over and over. It makes him giggle. He is fascinated by his big brother and will follow him around the room with his eyes, even if it means leaning over backwards to track him. He hates being on his stomach and now that he's learned to roll over, it's almost impossible to keep him there for any length time. He likes to rock himself by pushing off your lap with his legs. He has discovered his toes and can get both feet in his mouth at the same time. He's a talker, loving to screech and babble and play with his lips.

Children with Down Syndrome are going to have certain physical markers that show they are different. They are going to have mental limitations. They are going to have to work harder to move. But there are ranges for each of those things. And none of them are connected. So, you can have a child that carries all very distinct physical characteristics of Down Syndrome, but be very high functioning. Or you can have a child that has soft signs of Down Syndrome, but isn't as high functioning. They can have varying degrees of low muscle tone which can affect so many different things: from digestion to sitting, from eating to walking. They might have any combination of hearing or vision or digestive or cardiac issues. Or they might not have any at all.

There is no way to know what your child with Down Syndrome is going to be capable of.

There is no way to know what your child is going to be capable of.

All we can do is love them. Support them. Challenge them. Give them everything we can to help them reach that potential. And then we just have to sit back and watch. Let them be who they are going to be. It's the same for my child who has two 21st chromosomes as it is for the one who has three.

March 9, 2012

3:21 Day 9

If you haven't caught on already...World Down Syndrome Day is March 21st. I mean, I know I'm real subtle about it, but I just wanted to make sure you were aware. It's coming up.

Two things today: 1) How to show support through your Facebook Profile and 2) a little heads up about the preferred language for talking about Down Syndrome.

If we are friends on Facebook, you'll probably notice that I added a PicBadge back on March 1st. Through the WDSD group page, I was encouraged to add it for the month of March. While I totally understand not wanting to have it on your profile picture every day, I encourage you to keep this link handy so that on March 21st, you can add it to help raise awareness. Go here and follow the instructions on how to place it on your picture. It was completely painless and hassle-free.

On the NDSS website, they have a "Preferred Language Guide" that includes tips and corrections from the Down Syndrome community. While a lot of these things have yet to bother me, I have come across a lot of families who are really adamant about using the right language in reference to their family member. I'm trying to change the way I think about things simply because I want to respect those members of this community who find it offensive. It's the same as the r-word campaign. You might not find the word offensive, but why would you want to use a word that causes other people pain or made them feel disrespected?

From the list, I think the one most helpful to keep in mind is that people with Down Syndrome (and it is Down...not Down's) should be referred to as a person first. So, instead of saying a DS baby or a Down's child, say that they are a child WITH Down Syndrome. It's not a hard change to make and it helps remind us that they are a person first. We all know that our words have power, so think about making this change today. If not for you, than for the families in your community who want you to see their child/family member is someone who is more like you than they are different.

Have a good weekend!

NDSS and DSI have more tips about Preferred Language and ways to show your support!

March 8, 2012

3:21 Day 8

It's been one of those days when time just got away from me. Sam has physical therapy on Thursdays, so it takes a big chunk out of our day because of how we have to work nap times around it. So, instead of showing you how Samuel is different, today is all about how so much of his life will be spent doing things just like his brother. It was a lovely, warm afternoon and we spent a good chunk of it outside in the backyard enjoying the sunshine and playing in the dirt.







Check out NDSS and DSI for ways to celebrate World Down Syndrome Day, March 21st!

March 7, 2012

3:21 Day 7

Today is Spread the Word to End the Word Day. If you check out the sidebar, you'll see the button that will take you to www.r-word.org. There you can take an online pledge to remove the word "retard" and all it's variations from your vocabulary.

If you look at my son and other children and adults like him and can only focus on their mental disabilities, how are you ever going to see anything else about them?

I'll be honest, before I had a child with Down Syndrome, I didn't think twice about calling someone or a situation retarded. It was part of my vocabulary. I had no idea what that word felt like to someone who has a child with a mental disability or limitation. Now I know. And now, I'm doing my best to take that word out of my mouth. My mind. My world. Even though you may not personally know someone with Down Syndrome or have a family member who has to deal with a mental disability, I encourage you to watch the following videos and see if you still feel the same way about the word "retarded" when you are done.





"Just because you are different, doesn't mean you aren't amazing."

Check out the R-Word website for other ways you can encourage others to Spread the Word to End the Word.

Two more weeks until World Down Syndrome Day!

March 6, 2012

3:21 Day 6

Today, you get to watch little Sam in action. 

To begin with, an apology: I am not a cinematographer and I have completely butchered these videos. I always forget to turn my phone the right way when I use it for video and have to rely on YouTube to flip it around. I was in a rush to catch Sam being cute in the second one and completely ignored the too bright light coming in from the window and did not have time to pick up my embarrassingly dirty living room floor. I hope I don't give you motion sickness with all the shaking and too fast turns. Also, I have no idea how to pause video or edit out the part where I switch the pieces while feeding him. There is a reason why I stick to writing and leave videos to other blogs.

First up is an attempt to show you what it's like to feed Samuel solid foods. I've talked before about how we do speech therapy once a week...at this point, it's mainly feeding therapy. While that session only lasts about an hour, I then have to take what I've learned and incorporate it into our daily routine. At first, our goal was to help Samuel learn to breastfeed. After pumping for 4 or 5 months, and with him spending so much time in the hospital, my milk supply completely vanished. I even took all the herbal supplements and pumped around the clock, but to no avail. Samuel was never able to get the coordination and endurance needed to effectively nurse. While I still struggle with feeling like a failure over my inability to breastfeed him, I'm trying to let go of that guilt. We moved on to helping him learn to take a bottle more effectively. It used to take him a long time to finish a feeding, and half of it would end up leaking out of his mouth. I'm proud to say that he can chug a bottle like a pro now and we've crossed that particular goal off our service plan. Go Sam!

We've since moved on to working with solid foods. A couple of times a day, Travis or I sit down with Sam and go through the following routine:
He makes faces like that no matter what kind of food I give him. Even though it's frustrating, it's still pretty funny. Also, I promise he doesn't choke like that all the time. Just when I plan on showing it to the internet. He has good days and bad days with feeding. Today wasn't such a great day, but at least you can get a glimpse into what our life looks like on a daily basis and the challenges we face in even the smallest things, like feeding. Knowing that we've seen him progress so well in bottle feeding gives me hope that one day soon we'll be able to check this goal off our list, too. 

And now a little cuteness to balance it all out.

And as always....check out NDSS and DSI for tips and suggestions to help celebrate World Down Syndrome Day on March 21st!

March 5, 2012

3:21 Day 5

Oof. Mondays. Am I right?

It's been a long day for us. Normally, Mondays and Tuesdays are our down days. The days we try to escape to the playground, or at least the backyard. We hang out in our pajamas until 11, watch a little Sesame Street, and stretch out on blankets on the floor. Samuel has therapies on Wednesdays and Thursdays, so I try to keep the beginning of the week free for down time. More and more lately it seems that once we hit Wednesday, the rest of the week goes by on fast forward.

I like slow Mondays. They are good for us.

However, today was not that kind of Monday. I'm heading back to work soon. Just part-time, about 10 hours a week. I'm returning to the swim school for shifts on Monday and Tuesday nights. I'm going back to a different job than the one I left. This one allows for a lot more flexibility than having in-water teaching hours. It's a great thing and I'm really excited about getting out of the house for work, but the trade off for these few hours out of the house is less flexibility in our schedule for things like doctor's appointments and meetings with our therapy team. Looking at the March calender, we are booked up every Monday morning this month. Not a mistake I will be making again!

Actually, this morning, our busyness had very little to do with Samuel, for once. Luke got to be the main focus of all today's appointments. We had an appointment with Early Intervention this morning and then had a home visit by our service coordinator this afternoon.

Back in January, I shared some of my frustration and anxiety over how to balance our home life around meeting the needs of both our children. Samuel's schedule can get overwhelming as we meet with therapists and specialists, along with all the normal well baby visits to the pediatrician. Luke, up to this point, has been a fairly low maintenance kid. He's had all of one ear infection, and just a handful of colds in his 2 and a half years.

However, recently, the nagging concerns we had at the back of our minds about his language development got pushed to the forefront. At two and a half, Luke has a very small vocabulary. He can repeat rote phrases like, "Where is it?" "Where'd it go?" "It's coming!" (referring to having to wait for Netflix to buffer his movie, fyi), but he is not putting words together on his own. Like "more milk" or "cookie, please!" He understands everything we say and can follow complex lists of instructions, so it doesn't seem to be a cognitive delay, but something is missing. We'd been cutting him a lot of slack...first because he was a boy and everyone assured us they developed speech slower. Secondly, at his two year well-check, the pediatrician assured us that it was probably because of Samuel's birth and that all the chaos at our house would probably slow him down or cause him to regress.

Now, though, 6 months later, he's still only adding a few words a month and seems to be making very, very slow progress. So, with our connections with Early Intervention, we decided to get Luke evaluated for speech therapy. This morning, we had a routine hearing and vision screening done to rule out any physical issue that might be causing a delay. He passed with flying colors. Next week, we will have him evaluated by a therapy team and go from there.

While we were there, we decided to test Sam, as well. He did not pass his hearing test. Mostly because it appears that he has some fluid in his ears. This could be because of the recent upper respiratory gunk that is still lingering in his chest, so we will go back in a month or so to make sure. Children with DS have very small ear canals and it tends to be very hard to see the ear well. He passed his hearing test as a newborn, and shows no apparent signs of hearing issues, so we are banking on the fluid issue for now.

Did you know that about 75% of children with DS have some form of hearing loss? And about 60% also have issues with their vision.

I'm glad to see this Monday end, but I know this process we started for Luke is a good thing, even if it makes my schedule just that much more insane. I'm still working on figuring out how to balance and juggle all these different balls, but I'm finding that they are at least rubber balls and they don't mind being dropped every once and a while.

And now your contractually obligated picture of Sam.

As always, check out NDSS and DSI for ideas about how to celebrate World Down Syndrome Day, March 21st!

March 4, 2012

3:21 Day 4

Sundays are kind of a crazy day in our household because Travis is gone for about 75% of the hours the kids are awake.This makes for a long day for me, as I juggle both kids through all three meals, church, and rotating nap times. It doesn't leave me with a lot of free time to write!

So, today I encourage you to go read the stories of other families and people with Down Syndrome. The National Down Syndrome Society has launched a new campaign called "My Great Story." It's a place where you can read stories submitted by caregivers, advocates, and yes, even self-advocates. I've spent quite a few late night hours reading through some of the stories. You'll even notice a few stories by celebrities like Meredith Viera, Nancy O'Dell, and Chris Burke (That would be Corky, from "Life Goes On.").

There are numerous blogs out there written by parents who have children with Down Syndrome. Do some web surfing and see what you can come up with!

And as always, check out the NDSS and DSI for more information about World Down Syndrome Day on March 21st!

Sam patiently hanging out in his Bumbo while I sneak in a quick blog. 

March 3, 2012

3:21 Day 3

So, a Down Syndrome fact that is near and dear to our hearts (heh) here at the Norton household:

Children with Down syndrome are at a much higher risk for congenital heart disease. As a comparison: the incidence of congenital heart disease in the general population is 0.8 percent. The incidence of congenital heart disease in children with Down syndrome is between 40-60 percent. -DSNACD

Samuel was born with AVSDAtrioventricular Septal Defect (A phrase that took me a good two months to master saying without stumbling over it. I didn't even have to Google it to spell it just now. I know that's not impressive to you, but there was a time when I never thought I'd be able to wrap my brain around those 3 words, let alone spell them. So. Progress.). It became apparent about an hour after he was born that he had an issue with his heart when he became cyanotic on his way to the nursery. (Here and here are the posts about his birth.) That combined with some of physical indicators of Down Syndrome, like his bent ears, his low muscle tone, and the Palmar Crease on his hand, led them to do the genetic testing. 
Both Sam and I have a Palmar's Crease on our left hands, so while it often appears on children with DS, it also occurs in 10% of the non-DS population as well.

His heart defect is one that is fairly common in the Down Syndrome population. About 50 percent of the children with DS that have a heart condition have AVSD. Samuel also had the double whammy of having PDA, which meant we had to do his AV canal repair sooner than expected so that it wouldn't cause permanent damage to his lungs. If you want to read about our journey through his AVSD/PDA repair and the 24 days we spent in the ICU, click on the Heart label on the right sidebar. (While we have physically put some space between us and those days we spent in the hospital, I haven't gone back to read much of what I wrote during that time. It was such a rollercoaster of emotions, and honestly, it's kind of painful to go back and read those days when I was so hopeful that we would make it out without a pacemaker. So, all I'm saying, really, is cut me some slack on the lack of editing. I'll go back one day and clean it all up.)


Want to see what a baby looks like after two major heart surgeries? 



Still pretty dang cute, right?

Here is where/why he has each scar:

The largest scar at top labeled AVSD repair was actually opened for both surgeries. However, during the pacemaker surgery, they didn't have to cut through his sternum again, so it was able to heal on track with the initial AVSD recovery. His pacemaker is actually located behind his abdominal wall, but the arrow points to its general location. You can kind of see the outline of it in the picture above where he is stretched out. It's bigger than you think it is. 

Physically, Samuel rebounded very well from both surgeries. Within a few months, he showed no discomfort over any of it. His sternum is actually very prominent right now, but our cardiologist says that it will probably flatten back out again as he gets older. The other incisions have healed nicely, and the smaller ones are hardly noticeable anymore.

Samuel's surgery was not a typical one in that it necessitated a pacemaker, but I'm saving that story for another day.

So, while families and children with Down Syndrome deal with a host of challenges, about half of them are also dealing with very serious heart conditions. This is ours.

Remember, check out NDSS or DSI for more information about World Down Syndrome Day!

March 2, 2012

3:21 Day 2

So, World Down Syndrome Day. What can you do to help?

Well, I'm glad you asked. The National Down Syndrome Society and Down Syndrome International have put together all sorts of ideas and information for people to have easy access to and make it able to share. One of the easiest is the 21 Facts about Down Syndrome worksheet they have made available here.

Want a more tangible way to help than just learning some facts? The NDSS and DSI have both put together t-shirts and merchandise that you can purchase and wear to show your support for the 400,000 people in the US and over 5 million people worldwide who carry that extra chromosome. The NDSS shirts can be found here. The children's t-shirts are only $15 with free shipping with the added bonus that $5 from every purchase is sent to the NDSS. The downside to this company is that they only provide the 3:21 shirts in kids sizes 2T-5T. They also have adult t-shirts of a more subtle design (look under Signature shirts), but honestly, I wish they'd made the yellow shirts in all sizes. They are pretty stinkin' cute. I've purchased one for Luke, so we will model it once it arrives. Rumor has it that you must order by March 12th to receive it before March 21st.
These are Kelle Hampton's daughters showing off the NDSS 3:21 shirts. I am a little obsessed with cute little Nella.  Can you blame me? Check out Kelle's blog and her new book! She's my favorite DS parent blog.
If you aren't lucky enough to have kiddos in the 2T-5T range, DSI has also produced t-shirts and other gear that have the official World Down Syndrome Day logo on them. You can find them here. As far as I know, they do not send part of the proceeds to DSI, but they do have the larger kids sizes.
I wasn't able to find any t-shirts or gear for infants, so I went to cafepress.com and designed one myself. It should come in soon, so I'll let you know if it's worth spending the extra cash on to have one for the under 2 crowd.

So, go forth and outfit yourself in 3:21 gear and bone up on your facts so you can answer all the questions people ask when they see your awesome shirts.

March 1, 2012

3:21 Day 1

Down Syndrome is forever going to be part of our story. That reality is finally setting in for me. It's been 7 months since the geneticist came into our hospital room to explain Trisomy 21 to us and confirm Samuel's diagnosis. She handed us the paper that Samuel's chromosomes were lined out on with neatly matching pairs. Neatly matching up 1 by 1 until you got to the 21st set. And there sat an extra squiggly line along side that matched set. Out of place. Forever linked.

Trisomy 21 is the clinical name for Down Syndrome. It simply refers to the fact that there are three 21st chromosomes.

I'm slowly learning about Down Syndrome. The first 4 months of Samuel's life were completely dominated by his heart defect. A heart defect that is routinely seen in babies with Down Syndrome. The dual diagnosis of genetic defect and heart defect was a tough pill to choke down. Samuel's heart defect was, without a doubt, life threatening. If left untreated, he wouldn't have lived past his 2nd birthday. So, understandably, when faced with these two new things to learn about, pediatric cardiology took top billing.

Now that we are on the other side of the ICU from his AVSD/PDA repair and his pacemaker installation, I am making my way through the first stages of understanding just what that extra chromosome is going to mean for Samuel's life.

Some days that means I learn a lot about infant physical therapy. Other days it means I read the hopeful stories of other families who have been where I am going. And to be honest, some days it means I sob angry, messy tears after the rest of my family is in bed and I stumble across really sad things like a life expectancy that means I will probably have to say goodbye to him a lot earlier than should ever be asked of a parent.

This journey is not an easy one.

But what I am finding out is that it is not a journey my family is going to have to go alone. That same day our geneticist handed us Samuel's diagnosis, she also handed us a welcome packet from the Down Syndrome Association of Charlotte. We were quickly embraced by this community of people through emails and Facebook. They cheered Sam on while he was in the hospital and they continued to invite us to event after event until we were finally able leave the haze of the ICU behind and start learning about what this journey could look like for us. While we've only attended one event so far, it's been amazing to see the way this community connects, supports, and encourages one another. I feel like I have a whole village of Down Syndrome parents at my fingertips at all times. It is an unimaginable comfort.

























We were hooked up with the National Down Syndrome Society not long after we were discharged, and started receiving the monthly newsletters. A couple of months ago, I started hearing and reading about World Down Syndrome Day. If you look to the right, you'll see a button that will direct you to the NDSS website where you can learn more about this day.

March 21st (3/21...3:21...get it? Clever.) is World Down Syndrome Day. It began in 2006, but this year is a special year since it will be the first time it will be officially recognized by the United Nations.

So, in honor of this day, and in hopes to raise my own awareness and spread a little Down Syndrome love, I am going to be posting every day for the next 21 days. Come back and learn some more about Down Syndrome, a little more about my family's journey, and a lot of pictures of Sam.

If nothing else, come back for the pictures. He's pretty cute.