You're welcome
/Thought you might need a little chuckle this morning. I just so happened to come across this little gem in my travels. Enjoy...
Love & Laughter
A new friend...Aksel
/I would like to start off the new year by introducing you to another precious little one, Aksel.
I have had this post in the works for a while but could just never seem to get to it. Aksel, Hazel's new friend, came over for a visit in the summer time. I think Hazel was about 7 months old. Aksel was 6 months old.
He and his parents were in the process of moving here from Helsinki, Finland. They heard about our family through a mutual friend. It was very exciting to meet a little guy that will live in our local community and is the same age as Hazel. I imagine there will many more play dates in our future.
It doesn't hurt that his face is literally perfect. Such a little angel.
Love these...
A huge welcome from our family to yours Aksel.
Silver Lining
/When the geneticist sits down and tells you your baby has Down Syndrome, many thoughts go through your mind. Lots of things are said. Doctors and nurses tell you about the "challenges" that may lie ahead.
One of the thoughts, is that your baby will be different from all the other babies. Immediately you think, "woah, 'different' - that can't be good - doesn't sound good."
We all want our babies to be different, unique in a way, but when push comes to shove, not really. We don't want them to be that different. We want them to be the same, and do all the things that every baby does.
Any one of you moms out there that has been on Baby Center - EVER - FOR ANYTHING - knows what I mean. It's fine...no judgements!!! Chasing Hazel is a judge free zone...really...I have no room to judge - TRUST ME!! I digress...
So, I was saying...you find out your kid has Down Syndrome. For a minute (k...so way longer than a minute really) you feel like life as you knew it is over. Long story short (for now), you try to figure out what does it mean for your baby? Will they do all the things other babies do? It's scary and daunting and scary.
Here is the silver lining...
Hazel and all other babies like Hazel, will do all the things other babies do. They might work a lot harder to get there, but one day it just happens, they are there. We are blessed to be a part of their journey.
And mama pride!!! Well proud does not even begin to break the barrier of emotions you feel that your baby is different, but also very much the same.
Best of both worlds really.
Hazel crawled today...
With pride and a happy heart
See you tomorrow
Carter and Ella goin' strong!!!
/Part 3 of the visit to London post...finally!!! Hello Ella. My how you have grown...
Hazel finally got to meet precious little Ella.
They sat and played...rolled and talked. Ella was a very gracious host, allowing Hazel to play with all her toys. It was so great to meet Ella and Jen. We compared notes about how amazing our strong little babies are doing after facing open heart surgery. We shared feelings of pride. We talked about how hard past times were and, most importantly, we talked about hope for the future. With healthy, happy little babies, the possibilities are endless.
These pics are TOO MUCH!!!
And we met Ella's cat.
Also, we got to meet up with Baby Carter. He is also doing well after his surgery. Unfortunately, our visit was very short (between doctors appointments for both of us). We still managed to get some snuggles in.
My heart is so happy when I am around kids like Carter, Ella and Hazel. They have faced (and overcome) so much already. Yet, they are happy, healthy, thriving little people. What's not to love!!!
Thanks Alysha and Dakota for the yummy homemade cookies. I am not going to say what happened with it's leg.
What I will say is, it was a long car ride home and I may have felt like I was James Franco in the movie 127 Hours and well...use your imagination. The cookie is lucky it survived at all...right?
A Christmas Wish for Coco
/
Note: The following post was written by my cousin Heidi. She reached out to me about a little girl named Chloe that needs our help. You can learn more about Chloe below.
---------------------------------------------------
I know Stephanie's Instagram obsession is well documented here - but I too confess I am bit of an Instagram junkie.
Somewhere along my IG journey I stumbled on the photos of a little girl named Chloe - an adorable girl who, like Hazel, has Down Syndrome. Also like Hazel, she stole my heart.
Presently Coco, as she is called by love ones, is bravely battling Leukemia.
Coco's Mother has given me permission to share her story in hopes that each of you can say an extra prayer for her.
She recently completed round 4 out of 6 of her Chemotherapy and has had many rough days due to side effects.
Even with sores in her mouth, and nausea caused by the drugs, Coco manages to share smiles and has a joyous zest for life that only a child facing this disease could carry with them. Coco is truly a hero and inspiration to anyone that knows her story.
Coco's parents learned of the cancer while overseas preparing to bring home her new sister who also has Down Syndrome. She was adopted through the amazing organization, Reece's Rainbow.
Her mother, father and siblings are courageous as they too head down this difficult road that no family should have to face.
While our families join together to open gifts, share laughter, and enjoy a glass of vino with our holiday meals, little Chloe will be in the hospital.
I'm sure Children's hospitals make an effort to make Christmas special for those who must be there, but there really is no place like home.
Today, I ask you to say a prayer for Chloe. To make a Christmas wish for her recovery. And to send strength to her family.
You can follow Chloe on Instagram here...
5 Physiotherapy Tools - Down Syndrome
/Here is the latest PT happenings in our house (from 7-9 months).
Disclaimer:
All of the activities shown here have been approved by our PT and OT. Also, these activities benefit Hazel and you should consult your PT and OT if you are thinking about trying any of these with your children.
Another important thing to mention, is that when Hazel is not happy doing any of these activities, we stop. We try something new and if she's not into it, we drop it for a while. I never pressure her or force her to do any PT or OT.
Our Tools:
1. The Foam
When using the foam in this position, it encourages Hazel to weight bare on both her knees as well as her arms. These pics are from a while ago.
If I lean her up against the side like this, she leans and rests her arm on the foam. It gives her practice weight baring on one side at a time. It, also, helps her to support herself better because her arms are a little shorter than most.
We cut the foam so that Hazel's legs will stay together. This ensures that the weight is on her knees and that she is not flat on her hips.
Sometimes I put the foam out in front of her so that she can reach to put weight on her hands as well as her knees. Trying to get her into the 4-point crawling position.
We are doing some PT outside (this pic is old). I think it's nice to change the scenery so that Hazel always has something new to look at.
In this position, Hazel is learning to put weight on her hands and elbows.
I often will hold a toy up for her to reach for so that she learns to shift her weight from one side to the other.
Sometimes she doesn't like to do PT, so we stop.
We have her sit on the foam and pull herself up. She gets a great bend in her knees and it forces her to use all the muscles in her legs to stand.
As you can see, she is pretty proud of herself (I know the pic is blurry but look at that face).
2. The Mirror
One of my favourite PT toys to use is this mirror. Hazel will sit up for the longest time talking to herself, and trying to grab at her face and hands. It is great for encouraging her to remain in the sitting position, rather than grab a toy and then fall over and just lay down and play.
Plus, it has the added feature of being the most entertaining thing for me to watch. She yells, dances, makes silly faces. It's great!!!
Oh yes...and tries to give herself a kiss.
3. The Medicine Ball
The medicine ball is the BEST!!!
Hazel loves it and it is so effective for core strengthening. It was a little nerve racking at first but we took it slow and now I really love it. We use it everyday. I bounce her really slowly and move the ball from side to side and front to back. Her natural reaction is to stay up so she is constantly flexing her abs trying to balance. She thinks it is pretty funny.
4. The Play Mat
These pics are pretty old but I still put her on her play mat sitting so that she can reach up and play with her toys.
Hazel has been really working on core control. Her posture is getting very straight. She practices sitting often and enjoys the freedom she has with her hands.
5. The Exersaucer
She spends time in here everyday and is really getting the hang of standing and sitting. She thinks she's hilarious when she stands (again...blurry but the faces kill me).
National Down Syndrome Awareness Week
/In Canada, National Down Syndrome Awareness Week started November 1st and goes to the 7th. I found this AMAZING video. Watch it!!!! I'm not even going to be polite about it. It is the one of the BEST videos I have seen so far.
It explains everything perfectly. It includes a great break down and definition of what DS is, and how others can begin to learn about and accept DS into their lives. I love that it is narrated by kids. It is easy to understand for people of all ages. It is 12 minutes long, which is a long one, but it is worth it.
My only critique would be, that not all people with DS are like one of the 3 shown in the video. Not everyone with DS experience the same challenges, everyone is different. I do appreciate how some of the common challenges are highlighted and explained, so that we can empathize with these challenges.
Use it in your classrooms, in your homes, in your break room. Use it where ever you think it will make a difference.
Click here if you are having trouble viewing the video
Community Outreach
/October blew by us so fast, my head is still spinning!!! I have some posts left over that I really wanted to get out for DS Awareness month. However, although this blog seeks to raise awareness about DS, it is about Hazel first. She is a baby first, and I a mommy. Things like birthdays and Halloween could not be put on the back burner. Here is one of the posts I was hoping to get out...
Hazel and I visited her big cousin Stella's classroom to raise awareness in our community about Down Syndrome. Most of our schools are very proud to offer full inclusion for all special needs children.
Hazel was very well received by all the children and the staff. It was great to be able to explain a little bit about what having Down Syndrome means to the grade 4 students. Although, they have students in the school with t21, some of them did not understand what the syndrome actually meant for that person.
When the Q & A was opened up, the students were eager to share stories about the things that they did know about DS. A common theme that the children were unsure of was the difference between Autism and DS. The teacher and I tried our best to differentiate between the 2, but it is very important that the teaching and education go on in the home.
Please feel free to use either of these videos as a conversation starter with your children. For more information on DS you can visit this page as well.
I found this video on Autism. I hope these videos help your children to understand and relate to other children in their schools that may have Down Syndrome or Autism.
This was the speech Stella wrote to introduce Hazel to her class and teach them a little something about Down Syndrome. We had a separate recording session so that she was loud and clear.
Stella also brought this video to my attention. She thought that it may help others to see how beautiful people with DS can be.
Carter goes home
/Here is the update on Carter directly from his mom. He is a strong little guy!!! Day 1:
Carter has been moved from the CCCU to 4D in less than 24 hours after surgery! Carter's breathing tube came out last night around 8pm and he was put in a hood venting box as a breathing aid, which he has since ditched as he figured he could breath on his own. Carter has also had the following lines removed: catheder, arterial line, IV and NG tube. Carter has been taking formula on his own since midnight last night. We could not be more pleased with his progress.
Day 2:
It was a good day in terms of progress for Carter, but also a tough one too. Carter came off of his continuous morphine this morning and has been switched to an tylenol/ ibeprofine combination for pain management. Carter had a sedated echo this morning and had a hard time with the oral sedation. It also took him awhile to wake up afterwards. However his echo looks good. Brandon and I were amazed to look and see what his heart looks like now repaired in comparison to before surgery. It was also neat to hear his heart beat and what the blood flow sounded like between the repaired chambers. Carter was moved into his own room after his echo. Mommy/ Daddy and Nana/ Papa are now doing 12 hour shifts as we are expected to be more involved with Carter's care. Carter also had his incision tape removed. His incision looks great for only being 2 days post-op. Carter continues to have great stats We are now looking forward to going home soon, however whenever Carter is ready to do so.
Day 3:
Today was a much better day for Carter. He was much more himself today - very content, smiley and telling us all kinds of stories (some happy, some sad). Today Carter had his pacing wires taken out, along with one of his JP drains. The other one is still draining more than they would like to see. Hopefully tomorrow the other one will come out and then home maybe ?!? Oh and Carter is now off his STATS moniter! He is such a little trooper - we are so lucky!
Day 4:
Carter had another great night last night and continues to feed like a little champ. Carter's last JP drain came out early this afternoon. Carter has been given his discharge papers and we're packing up and going home!! We're so excited to come home and see our big girl, Dakota. Thank You everyone for all your thoughts and prayers. We truly appreciate it!
A badge of honour indeed...
/This letter was written by John Franklin Stephens as a response to Ann Coulter's use of the R-word in one of her tweets during the presidential debate. Her comment has generated quite a bit of attention, although fortunately it has not been for her. John Franklin is getting it all. Nothing could make me more proud than seeing the evolution of one ignorant comment. People are listening to John, respecting him, and are impressed with his ability to articulate his feelings so maturely into words. My response would not have been so kind. He is such a grown up.
"The R-word"
I bring this article to your attention for many reasons. Some of which are to highlight the abilities of individuals with DS. Their capacity to have their feelings tarnished, but also to respond with grace and maturity to a hurtful stereotype. How John demonstrated he could rise above the limitations that some may perceive to be placed on him by participating in the Special Olympics, also, his very well written letter to Coulter. And, finally, to raise awareness on how individuals with DS feel about the R-word.
I am not going to preach here about how you are a terrible person if you say it or have said it. I'm not going to judge you or think you are ignorant if you say it or have said it.
I have said it. I will stop saying it!!! Simple.
One problem is that it is so commonly accepted in society to say it, we don't even notice we have said it. The second problem is that it is hurtful. It is hurtful to those who may be categorized as being, according to John Franklin, "dumb and shallow." It is hurtful to those who love someone who might be considered "dumb and shallow."
My request here is simple...keep this is mind. That's it...don't be ashamed or get defensive that you have said it. Simply, keep it in mind.
This letter makes me proud...
An Open Letter to Ann Coulter
Posted on October 23, 2012 by Tim Shriver
John Franklin StephensThe following is a guest post in the form of an open letter from Special Olympics athlete and global messenger John Franklin Stephens to Ann Coulter after this tweet during last night’s Presidential debate.
Dear Ann Coulter,
Come on Ms. Coulter, you aren’t dumb and you aren’t shallow. So why are you continually using a word like the R-word as an insult?
I’m a 30 year old man with Down syndrome who has struggled with the public’s perception that an intellectual disability means that I am dumb and shallow. I am not either of those things, but I do process information more slowly than the rest of you. In fact it has taken me all day to figure out how to respond to your use of the R-word last night.
I thought first of asking whether you meant to describe the President as someone who was bullied as a child by people like you, but rose above it to find a way to succeed in life as many of my fellow Special Olympians have.
Then I wondered if you meant to describe him as someone who has to struggle to be thoughtful about everything he says, as everyone else races from one snarkey sound bite to the next.
Finally, I wondered if you meant to degrade him as someone who is likely to receive bad health care, live in low grade housing with very little income and still manages to see life as a wonderful gift.
Because, Ms. Coulter, that is who we are – and much, much more.
After I saw your tweet, I realized you just wanted to belittle the President by linking him to people like me. You assumed that people would understand and accept that being linked to someone like me is an insult and you assumed you could get away with it and still appear on TV.
I have to wonder if you considered other hateful words but recoiled from the backlash.
Well, Ms. Coulter, you, and society, need to learn that being compared to people like me should be considered a badge of honor.
No one overcomes more than we do and still loves life so much.
Come join us someday at Special Olympics. See if you can walk away with your heart unchanged.
A friend you haven’t made yet, John Franklin Stephens Global Messenger Special Olympics Virginia
EDITOR’S NOTE: John has previously written powerful opinion pieces on the R-word. Read one here.
There's this...
/Down Syndrome Awareness continues. I will be hitting the pavement heavy with some posts that will have you thinking...I hope!!!
Looking at these photos reminded me of a poem that Pip gave to us a few days after Hazel was born. When I read it then, I got through 4 lines and was crying so hard that I couldn't see through my tears. Not tears of sadness and grief. Tears of pride and honour that our little girl had finally joined us. Hazel Loretta had arrived.
When I read it now my chest puffs out just a little bit, and the smile can barely be contained on my face. As a mother, this poem is what I want you to know about my daughter. Not only that she has Down Syndrome, but that this is what it means for her. It does not define her. It is a part of her. Hazel is a baby that happens to have Down Syndrome.
We are at the beginning of our journey, and already she has enriched aspects of so many people's lives. I see how they look at her. I see what happens when she stands for them, dances for them, talks to them, smiles for them, and leans her head down on their shoulder just to be closer.
It is pure joy!
They are amazed. They are not judging. They are full of love. They accept her for who she is.
I have never seen anything like it. My heart bursts with love, it almost feels like it might break, when I see that these looks of pride, joy and unconditional love are targeted at OUR little girl.
Here is the poem that I love so much. Remember to keep the conversation about Down Syndrome, and other special needs, a topic of conversation in your daily lives (at least for this month).
The only way we can fully accept something, is if we educate ourselves on the topic. Thanks everyone your support is insurmountable!
The Creed of Babies with Down Syndrome
My face might be different But my feelings the same I laugh and I cry And I take pride in my gains
I was sent here among you To teach you to love As god in the heavens Looks down from above
To him I’m no different His love knows no bounds It’s those here among you In cities and towns
That judge me by standards That man has imparted But thus family I’ve chosen Will help me get started
For I’m one of the children So special and few That came here to learn The same lessons as you
That love and acceptance It must come from the heart We have have the same purpose Though not the same start
The Lord gave me life To live and embrace And I’ll do as you do But at my own pace
From Carter's mommy...
/This update is directly from Carter's mom...
Carter came out of surgery just before 2pm and is now resting/recovering in the CCCU (Cardiac Critical Care Unit).
Surgery went as well as Dr. Caldarone expected, with no complications. We were finally able to see and kiss our sweet little man by 3:30pm. He looks very good despite all the tubes and wires he is hooked up to. Stats are good.
We we're told by one of the nurses that Carter charmed everyone with his smile right up until the moment they put him to sleep. It was a very long and stressful day, but we are happy to now put this behind us and for the new and improved Carter (Carter 2.0 as friend Ella calls it). But most importantly we are looking forward to not have to worry about this any more and moving on with our lives.
We are very thankful that Brandon's parents and my Aunt Rosemary were down with us to keep us sane and that my parents and Tata Kasey could watch Dakota. And to all of you for your thoughts and prayers. Please know that we truly appreciate it. But we ask for your continued thoughts and prayers over the next couple of days as they will be critical in his recovery. Many thanks!
Alysha & Brandon
Carter Update
/I don't know much yet. I do know that the surgery went as well as they expected. He is in recovery and mom and dad were able to go and see him.
I will update when I know more....thanks for the prayers and thoughts!!!
Carter's Surgery Booked!!!
/There was an opening at Sick Kids and Carter's AVSD surgery is booked for tomorrow!!! I couldn't be happier for him and his family to be able to finally get this done and over with. I hope that they experience the same feelings of relief when it is all over that we did.
I was honoured to introduce Carter to you all!!! I hope that you have fallen in love with him like I have.
Please, while at your dinner tables or before you settle in to sleep, keep them in your thoughts and prayers for tomorrow and over the coming weeks. His AVSD surgery is going to be more complex than Hazel's VSD surgery was, but he is a strong little man that I am confident will do just fine.
Down Syndrome and Occupational Therapy...huh???
/What exactly is Occupational Therapy (OT)???
This is a common question that I get asked when discussing the services and therapy that Hazel receives regularly. It is a common assumption that those with t21 need only physical therapy to increase their muscle tone. They actually need OT as well.
The definition according to the Canadian Association of Occupational Therapy is as follows:
"Occupational therapy is the art and science of enabling engagement in everyday living, through occupation; of enabling people to perform the occupations that foster health and well-being; and of enabling a just and inclusive society so that all people may participate to their potential in the daily occupations of life."
I see it as a way to help make Hazel more independent. At the moment, her OT is working with us on how to master everyday skills, such as, feeding herself, fine motor skills, and skills that will lay the foundation for more complex actions as she grows.
Here is an example of Hazel doing her Physio Therapy (PT) and OT. The reaching to grab a toy is her OT at work. The fact that she is weight baring on one arm and knees is a PT skill (I will post a more specific post for the PT that we are doing soon).
Now that she is 8 months old, we are also working on how to self feed, how to chew dis-solvable solids and how to drink from a cup. Hazel is doing very well adjusting and working hard to be successful at these skills. As we have seen, she is always up for a challenge.
It is very important to remember that every baby is different, and will reach these milestones when it is right for them.
Here is a great video, which was put together by some university students to explain what OT is. I love it...they came up with a very creative way to get the message across.
Hope this helps!!!
Carter's surgery CANCELLED
/Unfortunately, Carter's surgery has been cancelled for the time being. They have given no reschedule date as of yet. I will be sure to update everyone as I get more information.
For now, we keep the emergency surgery cases in our hearts, 1 newborn baby and 2 babies that need heart surgery immediately. Let's also be thankful that Carter is not one of those emergency cases.
Thanks for your continued support
Carter Needs Our Prayers!!!
/We had the pleasure of meeting a fantastic family while we were in London with Hazel. They were awaiting the arrival of their 2nd child, Carter. Among the many things that define Carter - handsome, determined, happy, loving - he has Down Syndrome. Naturally, he and Hazel had to be friends.
When Carter was in his mommy's belly he defied all odds. He faced Cystic Hygroma, Fetal Hydrops, Atrioventricular Septal Defect, Tetralogy of Fallout and two patches of edema. Yes, it is as scary as it sounds. Yet he is here - healthy, happy, and thriving. This is just the type of kid Carter is. Another tiny hero!!!
Although Carter has been doing well to this point, he is starting to experience some difficulty growing and thriving due to his heart condition. He will be going in for AVSD surgery on Tuesday October 16th. He has a wonderful family to support him. Please keep Carter and his family in your thoughts and prayers over the next little while. They are going to need our help to get through this difficult time.
The support that we have received from all of you carried us through some of our darkest days. We can never fully express our utmost gratitude for your involvement and concern for the well being of our baby girl. It has helped Hazel, Ella and now Carter. Thank you so much everyone for being such an amazing community to be a part of...we are proud!!!
A quote from Carter' s mommy...
"Thank you to all our friends and family and to those people we don’t even know for your kind words, but most of all your prayers. You have made this journey less difficult. You inspire us to be better, to do more to raise awareness for those with Down Syndrome, but most of all remind us to enjoy the little being that Carter is. So I say again, Thank You, thank you from the bottom of our hearts. We are so lucky and so blessed."
(I have attached Carter's full story below. His mother, Alysha, wrote down her experience and wanted to share it with you all...very brave!!!)
Carter and Hazel had their first play date this summer, we hope there will plenty more. Hazel and mommy waiting to meet the little man...
Here they are...perfectly sweet family!!!
And this is the little fighter, Carter...
Kinda hard to hide the love I have for this little angel...
Seriously....SERIOUSLY!!!
The remainder of this post was written by Alysha, Carter's mommy.
My husband Brandon and I found out we were expecting again in late July 2011. Needless to say we were a little surprised but were excited to give our daughter Dakota a play mate. Our families found out shortly thereafter as it’s hard to keep surprises from them. As us, they were elated.
At 13 weeks I went for my IPS (Integrated Prenatal Screening <1>) blood work and ultra sound. I was so excited to see this little being inside of me and in turn to show everyone the ultra sound pictures. Two days later I got the call from my doctor’s office at work telling me that there was an abnormally large pocket of fluid on the back of our baby’s neck which could signify a chromosome abnormality. I don’t remember much of what the nurse told me during the remainder of that phone call. The thought that there was something wrong with our little one is all I could think of. I immediately dropped to the ground and broke down in a sobbing mess. That call would lead to a string of events that would test our strength, love and faith for one another. It is among many days in my life that I will never forget.
My doctor’s office immediately set up an appointment for the next day to speak with a genetic counselor, down in London at LSHC. Brandon unfortunately couldn’t come with me because of work, so his mom was able to go with me thankfully, so I wouldn’t have to go alone. So many thoughts ran through my mind leading up to this appointment. “Is there something I did wrong?”, “Is this because I forgot to take my prenatal vitamins a couple of times?” “What is going to happen to our little one…?”
Needless to say I was not prepared for what the geneticist was about to tell us and to be honest it is still a bit of a blur. Our genetic counselor was very kind. She took her time and explained everything in great detail and then again when we asked her to just to make sure we understood everything. We were told that there was a patch of fluid on our baby’s neck was referred to as Cystic Hygroma <2> meaning that there was a 50-60% chance that our new little one had some sort of genetic disorder (Trisomy 21, 18 or 13) <3> and that we were also at a very high risk for miscarriage as there was also Fetal Hydrops <4> present. At that point were not expected to make it past the 18-20 week mark. She explained all the different syndrome’s our child could possibly have. All of which seemed terribly frightening at the time.
And then we were presented with our options. We could either 1) have a CVS (Chorionic Villus Sampling <5>) test done in which we would need to decide on immediately because of where we were in the pregnancy. As well because the procedure would need to be booked immediately and we would need to go to Toronto for it. 2) Have an Amniocentesis <6>, 3) let nature take its course or to 4) abort the pregnancy and walk away from this nightmare.
I knew there was no way I could go through the CVS testing as we would need to make a decision on the spot and it just all seem to rush. Brandon and I put a great deal of thought into deciding what we wanted to do and how we were going to proceed. We also took the time and talked to our families. We ended up deciding to do an amniocentesis as we knew we couldn’t go through the entire pregnancy not knowing what was wrong with our little one or worry knowing there was something possibly wrong. Even though it was heavily suggested that we abort the pregnancy we are not comfortable doing so. This baby was made with love and we felt it deserved to be brought into this world with love and given the best of everything we could give it.
Two weeks later (the Tuesday after Thanksgiving) I went in for the amniocentesis procedure in London. I was so scared about the whole thing – “Would it hurt?”, “How big is this needle again?”, “Will our baby be okay?” I can’t say that it was a quick and painless procedure, but was happy when it was all over. We received the initial results from that testing (via a phone call) within a couple of days from our genetic counselor. The initial results show that baby has Down Syndrome. In one sense we were relieved that it wasn’t anything worse but sad at the same time. We were sad that our baby would have some difficulties to face in life. But then again, what child doesn’t?
Once we found out the initial results we began to share the news with family and friends. Quite a few of our family and friends told us not to trust the results from the amniocentesis, that the results were often wrong. But in our hearts, we knew it was right. The detailed ultra sound that we had a couple of days later verified these results. The ultra sound detected one of two things with our baby. One being that the Fetal Hydrops had disappeared and we were not at such a high risk for miscarriage anymore. The other thing being detected was that our baby had a very severe dual heart defect which would require surgery possibly within the first few months of life. I think finding out that our little one had heart problems made me even sadder than finding out about the Down Syndrome. At this time we decided to also find out the baby’s sex. We were told that we were expecting a little boy, with whom we would give the name, Carter.
After our detailed ultra sound, we were immediately rushed to pediatric cardiology to speak a cardiologist who carefully explained our baby’s heart condition to us. He informed us that our baby has a very large hole in its heart located between all four chambers, where the blood coming into the heart and going out of the heart to the other organs of the body are mixing together. This type of hole is called AVSD (Atrioventricular Septal Defect) <7>. As well the pulmonary artery of the heart, which brings blood to the lungs, is was very narrow is size. This type of defect is called Tetralogy of Fallout <8>. As well the cardiologist thought there was a very good chance that we would have to deliver in Toronto, unless there was some significant change in the months to come.
Amongst finding out the news of our little one, we were in the process of purchasing our first home, packing, and getting ready to move. Life was very busy for us at that point in time. We tried our best to carry on with our daily lives and be positive while having very heavy hearts of the news. But life as it did carry on and we began to look forward to meeting our little one.
However we were hit with another blow of bad news during one of our appointments in Mid November. Our latest ultra sound showed that our little one had developed two patches of edema <9> - one patch being located on the forehead and the other around his already fragile heart. Needless to say we went into panic mode – “What does this all mean?” “What would happen to our little one?” Our obstetrician first explained what edema was and what our next steps would be. At that point he felt it would be best if we wait a couple of weeks and see if the edema progressed and then go from there. We went back two weeks later and had an ultra sound which miraculously showed that the patch of edema surrounding the heart had disappeared and the patch on the forehead was reseeding. Our obstetrician told us that this is his third case in his thirty-seven year career where this has happened before. We could not have been more joyous at that moment – we like to consider it as our Christmas miracle.
After one of our many appointments, we ran into our geneticist, who had just had an appointment with another young couple with a similar situation, and was wondering if we would be interested in connecting with them. We said yes immediately as we thought it would be nice to go through this process with someone else and then hopefully in turn become lifelong friends. Jen and I immediately connected through e-mail and swapped stories of our pregnancy journeys up until that point. It was so nice to be able to talk to someone who was going through what we were and who felt what we were feeling.
In early February we had the privilege to tour the NICU where our little one would be spending its first few days plus of life. While there we had the opportunity to meet a little one with Down Syndrome and I have to admit I fell in love. Her name was Hazel. She was so beautiful amongst all the wires and tubes she was hooked up to. But seeing all of this was hard too, knowing that this is what our little one would be faced with too - it broke my heart. Thankfully the nurse giving us the tour gave me Hazel’s mommy’s contact information (with her permission of course) to call should I have any questions or just want to talk. And I did. I had so many questions and Stephanie was great. I felt an immediate connection. We talked for hours. And I felt a little bit more at ease and prepared for what we were about to face.
In one of our final appointments towards the end of February it was decided by our obstetrician that we would induce the labour at 38 weeks because the blood circulation in the umbilical cord <10> between Carter and I was starting to decrease and we risk any additional stress his heart. So we made our preparations for the chosen date of March 9th. But low and behold Carter had his own plans and came on his own, arriving at 7:32am on the day we were to be induced. The delivery went smoothly and was by far much shorter than his sister’s. And we couldn’t have been happier to hold our precious little bundle and finally just meet this little miracle that would indeed change our lives forever.
We spent 18 days in the NICU with Carter. He was in the best of care with many wonderful nurses to look after him and adore him. Carter had troubles feeding while in the NICU and was slow to gain weight, but I was persistent and learned to do things on my own for Carter. By our last few days in the NICU I was able to do everything that the nurses were doing and Carter was sent home with NG tube. Not an ideal situation, but still manageable one. Once home Carter continued to amaze us – kicking the NG tube after 3 weeks, gaining weight and height at a significant pace.
Carter is such a joy and we couldn’t be happier to have made the decisions we did. He is such a happy baby, so content, always smiling and laughing. Carter’s therapy team from CPRI London say he is right on par with his fine and gross motor skills, which can be compared to most “normal” babies. Carter is not afraid to show the world who is and what he can do despite his circumstances, leaving us all amazed. Carter was rolling over at a month and half old. He can reach and grab his toys, bring those toys to his midline and to his mouth. He can sit up while assisted while maintain good steady neck and head control. His BIG sister Dakota is his biggest encourager. She is completely in love with her little brother and is such a big help when it comes to taking care of Carter. Although this journey has been difficult for her too. Dakota tries very hard to understand what is going on with little brother and asks lots of questions. We as parents have hopefully done our best to explain it to her.
Carter is now starting to slow down quite considerably and is showing signs that he is ready for surgery. It is hard to watch him struggle to feed and play. Now that we know the date of his surgery and that it is soon to come, we couldn’t be happier. And to not have to worry about his fragile heart and having it hold him back. However that doesn’t mean we still are not nervous and scared for what is to come. But knowing that he is in the best of hands medically puts us somewhat at ease. Carter is very lucky to have some great role models to follow (Gage, Hazel and Ella!), lots of angels to watch over him and even more people to pray for him and his well being. Thank you to all our friends and family and to those people we don’t even know for your kind words, but most of all your prayers. You have made this journey less difficult. You inspire us to be better, to do more to raise awareness for those with Down Syndrome, but most of all remind us to enjoy the little being that Carter is. So I say again, Thank You, thank you from the bottom of our hearts. We are so lucky and so blessed.
Below are some quotes I came across while still pregnant with Carter that made our journey less difficult and gave us faith to care on. Perhaps they could do the same for you during a hard time and when it’s hard to see what the future has in store for you.
"Faith: Faith is being sure of what we hope for and certain of what we do not see." Hebrews 11:1"
"Someday everything will all make perfect sense. So for now, laugh at the confusion, smile through the tears, and keep reminding yourself that everything happens for a reason!"
<1> To read more about IPS testing, please refer to the following website https://www.mountsinai.on.ca/care/pdmg/tests/ips
<2> To read more about Cystic Hygroma, please refer to the following website http://www.childrenshospital.vanderbilt.org/services.php?mid=8705
<3> To read more about Trisomy disorders, please refer to the following website http://www.biology.iupui.edu/biocourses/N100/2k2humancsomaldisorders.html
<4> To read more about Fetal Hydrops, please refer to the following website http://emedicine.medscape.com/article/974571-overview
<5> To read more about CVS testing, please refer to the following website http://www.babycenter.ca/pregnancy/antenatalhealth/testsandcare/cvs/
<6> To read more about Amniocentesis, please refer to the following website http://www.babycenter.ca/pregnancy/antenatalhealth/testsandcare/amnio/
<7> To read more about Atrioventricular Septal Defect (AVSD), please refer to the following website http://www.aboutkidshealth.ca/En/ResourceCentres/CongenitalHeartConditions/UnderstandingDiagnosis/DiagnosisofCongenitalHeartDefects/Pages/Atrioventricular-Septal-Defect-AVSD.aspx
<8> To read more about Tetralogy of Fallot, please refer to the following website http://www.cincinnatichildrens.org/health/t/tof/
<9> To read more about edema, please refer to the following website http://my.clevelandclinic.org/disorders/edema/hic_edema.aspx
<10> To read more about fetal and newborn blood circulation, please refer to the following website http://www.childrenshospital.org/az/Site636/mainpageS636P0.html
AVSD anyone?
/What is AVSD? In layman's terms, it is a hole in the heart. It causes blood to take the wrong path into and out of the heart. Also, the heart has to work overtime to try and push the blood out of the lungs making it difficult to breathe and eat. Fluid can build up in the lungs and around the heart, which is characteristic of congestive heart failure.
In mommy terms, it makes it a struggle every time your little angel has to eat. They burn calories at an extremely fast rate. Our cardiologist compares eating with AVSD or VSD, to running a marathon. Usually people can only run one of those a day. Our little ones have to do it repeatedly. Therefore, making it easy for them to experience failure to thrive.
In medical terms, it is a hole between the two atria and the two ventricles. This large hole cause oxygenated blood and deoxygenated blood to mix. Less oxygenated blood is able to reach the body. Therefore the heart has to pump harder to get oxygen to the body, and pressure in the lungs increases. Click here if you would like more information on AVSD.
In the general population the incidence of having AVSD is quite low. The rate is much higher in those with Down Syndrome. Hazel had VSD, which is a little bit different. Click here to read more about VSD.
You may recall that this is what little Ella has repaired recently. She continues to thrive and grow. Now...we meet another little person about to undergo this AVSD surgery, Carter.
Occupational & Physical Therapy for Babies
/For Down Syndrome Awareness month, I thought I would put together a post of all the PT and OT Hazel has done from birth to 6 months (she is doing more than this now, I will post later). I tried to be thorough and remember back to when we started. Hope it helps!!! This is our experience and if you would like to try any of these activities, please ask a professional in your community.
We are so fortunate to live in a community that has excellent resources for children with special needs, like Hazel. There are so many countries in the world that are not equipped with the financial means or the expert knowledge that Canada has to support children with different abilities (K...I am stepping off the soap box now, but I am only putting it aside, this topic will be addressed another day). I hope that this post helps those who feel they live in a community that doesn't have the best support for their children.
The John McGivney Children's Center (JMCC) provides us with all the services that Hazel needs, such as occupational therapy (OT), speech therapy and physical therapy (PT). I've sung this tune before and I will continue to sing the praises of the therapists that come to visit and play with Hazel. They are always encouraging, positive and extremely knowledgeable in their respective fields.
(Note: Hazel is awarded in-home services as a result of her cardiac issue (VSD). She is considered medically fragile and therefore needs to be in a clean sterile environment. When she is bigger and stronger she will receive all of these services at JMCC.)
Now that Hazel is done her surgery and getting older we can do some really fun muscle awareness and strengthening activities with her. We always follow her lead and never push her to do anything unless she wants to. For us, and all her therapists, it is first about Hazel being happy and content, one of the reasons I love them so much. Hazel has demonstrated a will to grow and meet her milestones all on her own with little help from us. We are only providing her with the foundation and from this she will build her empire.
Disclaimer:
I want to make a note that I am not suggesting that anyone do any of the activities that Hazel does without proper instruction from a therapist. Every child is different, works at their own pace and has needs that are their own. I am outlining the basics for those of you who are interested and can gain some understanding of what we do to support Hazel. Also, seeing what we do may spark discourse with your therapist to see whether these activities would benefit your child.
I wasn't as diligent at documenting her OT and PT at the beginning, perhaps because there really is not much we did early on. Starting from when she was about 3 to 4 months old we would put her laying on her side up against the back of the couch. We would often hold a toy out in front of her to encourage her to bring her hands to her mid-line. We gave her as much tummy time as she would allow. I would also carry her around the house in my arms while she faced out, which also encouraged strengthening the neck muscles. Rolling over started when she was about 4 months old.
Hazel in her side lying position...
Hazel working on balance and sitting up...
Sometimes I put her nursing pillow in front to support her and give her a top to play with her toys...
Now that she is 7 months and has mastered the art of rolling everywhere and anywhere, we are moving on to sitting up and being able to shift her weight from one side to the other, which will help to facilitate going from laying to sitting. Hazel has been doing very well and can sit balanced for a while, both using her hands out in front and with no hands at all.
Here is the position we have her getting used to. This will help her to transition her weight from one side to the other. So she will be able to turn to either side to play with her toys. Also, this will help her to learn to lean on and strengthen both arms. There are pictures attached of Hazel with her OT...LOVE LOVE LOVE her!!!!
Having her legs tucked under her like this will start getting her comfortable on her knees for crawling. Her arms are on top of her OT's thigh. We are making sure her knees and feet stay together so that her joints are not getting over extended. The OT is just putting gentle pressure on her leg to keep it tucked under and in the right position.
This one is just sitting with her feet firmly on the ground, which will get her used to putting pressure on her feet. The OT is holding her hand and applying light pressure to the tops of her knees or tops of her feet to create muscle awareness for her legs and feet.
This is Hazel's play arch. This is another way to help her to shift her weight and get used to balancing her weight on either side. It also encourages her to grab and play with her toys, aiding her along with her gross and fine motor skills. Her OT is there to guide her and let her move where she would like. She is allowing her enough freedom to go to whatever toy she wants, she just keeps her hands on her to support her.
FINALLY, the medicine ball has a purpose in our home!!! By putting Hazel on the ball and gently bouncing her on it in the position shown, it creates muscle awareness all over her body.
Her OT is applying firm pressure to keep her from slipping off (obviously) and so that she feels comfortable. She doesn't want her to over-extend any of her muscles by trying to look up and back at her.
She can let her stand on her legs, as shown here, to get her used to using the muscles there.
International Down Syndrome Coalition
/Have you heard of IDSC for Life? Check them out!!!
Here is their Mission Statement (taken directly from their website):
IDSC for Life is dedicated to serving individuals with Down syndrome from conception throughout their lives. We will achieve this by supporting families who have been given a prenatal diagnosis of Down syndrome. We direct families to accurate and up-to-date information about Down syndrome. We extend our heartfelt compassion, and hope and healing to parents who who were pressured to terminate, and ended their pregnancy because of a Down syndrome diagnosis and later regret that decision.
Here are only a few of the services that they offer. Not to mention the adorable pictures that they post all the time!!! This organization is very active in promoting knowledge and awareness about those living with Down syndrome.
1) Offer support to parents who are new to the Down syndrome diagnosis.
2) Create awareness about the current trend by professionals, friends and family, who pressure women to terminate a pregnancy when Down syndrome is diagnosed for their pre born baby.
3) Connect to the Down syndrome associations as a resource to them and their members
4) Connect to the national Down syndrome organizations as a resource to them and their members
In honour of Down Syndrome Awareness month, we volunteered to have IDSC for life feature our family on their website and Facebook page. They are running a campaign called "Real Families, Real Stories." This campaign aims to highlight how loving someone with Down Syndrome has changed their lives.
We are proud to share that our story was chosen to lead off the campaign. You can view it here on the IDSC website. Don't forget to like their Facebook page!!!
