Tag: down syndrome

One Year and Stronger Than Ever

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That’s right everyone, my boys are one year old. They are both doing fantastic, growing and developing like champs. Oh and they are really into frosting right now. Not cake. Frosting. 

For those of you curious about what they are doing from a developmental standpoint, here’s where we are.

Giovanni has been pulling himself up for months, using the couch, ottoman, baby gates or nearest person. He recently started taking some chances and letting go for a few seconds and standing. We also practice walking, with him holding our hands, and he loves that. He talks a lot and says things like mama, dada, and nana very clearly. He loves to feed himself using his hands and has gotten quite good at it. He’s a handful and we adore him. 

Dominic has perfected his “leap frog”. This is his current way of getting around, as we are still working on crawling. He has all of the right ideas but apparently bouncing on all fours and then hurling himself forward is far more enjoyable. He can put himself in sitting up position on his own and he does it with ease now, and he sits up very straight and strong. We are trying to get him used to bearing some weight on his legs, and with our help he is able to stand for a good 30 seconds, sometimes even longer. He babbles a ton, and says mama and dada very clearly. We are working with a feeding specialist to learn how to chew, move his tongue laterally, and to strengthen all of the mouth muscles. With that said, puréed foods are still his jam. We do offer small pieces of food and he eats it just fine, but it mostly just gets swallowed. All in all, his PT and OT are very pleased with his progress and we are extremely proud, he’s perfection. 

It’s so hard to believe that they were this small once, but what an amazing year it has been. These boys have taken us on quite the ride, and we’ve loved every minute.

If anyone out there has any questions regarding their development, how my typical baby is helping to teach my DS baby, or how they compare to one another, I’m happy to share what I’ve noticed and learned. I’m not an expert at all, just a mama. Please just ask, I’m happy to share.

XO

For Giovanni

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I would like to dedicate a post to Giovanni today. He does not have therapists coming to the house to play with him, and in baby class we discuss Dominic’s progress more than his. Doctors appointments are often more about his brother, or sometimes they are entirely about his brother. He may not notice it now, but in years to come I’m sure he will, and I’m also sure that it will be something we need to handle with care. 


Giovanni and I share a special bond. Everyone says he looks just like me, and Giovanni has nursed since day one, so he and I have  always had that. He is often referred to as a mama’s boy because he likes to be with me and sometimes I’m the only who can bring him comfort and calm. As a newborn, he was fussier than his brother, but he has always been a wonderful baby, so curious and funny. As he has gotten older, he definitely has a mischievous streak and lots of energy. He is a very busy guy and has lots to do — those toys aren’t going to play with themselves. He loves to pull himself up on the baby gates, knock down towers of blocks that we build up for his knocking down pleasure, and he really enjoys pretending to read books. That’s right, he doesn’t like being read to these days because he can hold his own book and read to himself. He makes us laugh and has the sweetest chubby cheeks around. His gummy smile can stop you dead in your tracks. 


Giovanni, if you were to read this one day, here is what I would like for you to know. You are everything to us. You were put here in this world to bring smiles, laughter and joy. You, and you alone, are special. Is it wonderful that you have a twin? Of course! Is it wonderful that you are your brother’s best friend and teacher? Yes! But YOU are enough. I will always cherish my quiet moments alone with you, when I held you close and smelled your head while kissing you. I will always be grateful that I was able to nurse you and know what it felt like to feed you and have that bond. Just because we often have to give a little more time and energy to your brother does not mean that we do not want to spend it with you. Life is never easy and straightforward, and sometimes we will make mistakes, but no matter what, we love you. Our lives are defined by what we do and how we live, so we will always be intentional and loving with our words and actions. Please know that we are doing our best and that we cannot imagine our lives without you. You make life so much better.

xo

When One Is Not Like the Other

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As most of you know, one of my twin boys has Down Syndrome and the other does not. One thing I have found is that we have not come across many other families like ours, so I thought it might be helpful to share our experience thus far. 

First, to answer a question I get most often…

No, we did not know Dominic’s diagnosis before birth. 

I think this is a good jumping off point. We did not know that Dominic would have DS but we were aware of the possibility. Because I was pregnant with twins and had undergone IVF, I was immediately referred to a specialist because I was considered high risk. There, it was suggested that I take a chromosomal blood test to check for any abnormalities. Although the test could not tell us a definitive yes or no, it could tell us if there was a greater chance of one or both babies having a chromosomal abnormality. My test revealed that there was a greater chance for one or both of the babies to have DS. At that point, they asked if we wanted to do further testing for a definite answer, and we chose not to put our babies at risk because we knew it didn’t matter to us.

I had a relatively easy pregnancy and neither babies showed any “soft markers” for DS. Many babies show signs of having DS while in utero, but both babies looked perfect until the last month of my pregnancy. Dominic’s growth had slowed down and there was a definite placental issue, so instead of letting me go to full term, my doctor decided to induce me at 37 weeks. In that last month, as a final attempt for Dominic to gain some weight, I increased my protein and caloric intake. It worked and my boys were born at 37 weeks at 5 lbs 5 oz and 5 lbs 12 oz. 

From birth, we could see that Dominic could have DS but he lacked a lot of the physical traits, so the only way for an accurate diagnosis was to get his umbilical cord blood tested. Shortly after birth we received the confirmed diagnosis. A lot of people share that they felt grief upon learning their new baby has DS. I think that the early on chromosomal test is when I grieved. I took that news very hard because we had worked so hard to get pregnant and I felt like once we actually got pregnant, everything would be perfect. I was worried that we would have anything less. Little did I know, my boys are beyond perfection. I know how that sounds, but it’s true. 

While we were still in the hospital, there was a moment with Dominic that I will always cherish. I took him in my arms and held him close, smelling his head and kissing his face, telling him how I felt about this life we would share together. I told him that people may not see how special and wonderful he is right away. They may make judgements before they get to know him. That things may be harder for him. That we will need to support one another every step of the way. But first and foremost, he is loved and wanted. We could never possibly understand what this love would feel like. To be a new mom and have these two gorgeous babies was nearly too much for my heart–I thought it could burst. 

Twins are a very special and unique thing. My boys have known each other since the very beginning, and to see them smile at each other, you know that their bond is unbreakable. I know that there will be fights and jealousy, but I believe in my heart that they will always support one another. I feel like they were born to be together, to be best friends. To know that Dominic will teach Giovanni to love without bounds and to be inclusive, while Giovanni will teach those around him by his example, is such a gift. I think that they will be each other’s biggest fan and protector.

So, yes, one is not like the other and that’s how we like it in our home. True individuals but cut from the same cloth. 

xo

Life with Two Tiny Humans

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The last time I shared a post, the boys were 3 months old, and so much has changed since then as we approach their first birthday. I have missed writing here and sharing about our life, so I have given the blog a new look and will be sharing as much as possible about what’s going on here. I will, of course, be more focused on motherhood, but I will still share about cooking and food, secondhand finds, home renovations and decor, and our adventures. For any of you that are new here, allow me to fill you in a bit.

After a long struggle with infertility, the combination of an amazing doctor and his team of nurses along with tremendous support from family and friends, we hit the baby jackpot and became pregnant with twins. Our boys are the greatest gift imaginable and our lives are forever changed. Giovanni is spunky and curious, while Dominic is sweet and soulful, and their love for each other is clear. Dominic was born with Down Syndrome, so not only are we new to parenthood and twin life, but we are also a part of this wonderful Down Syndrome community.

Back when I was writing more regularly, we were in the first home we purchased, enjoying Taco Tuesdays, I worked full time, and my adventures involved lattes and concerts. Nowadays, we are in our forever home, and as a full time stay at home mom, I cook more often than Tuesdays and it’s not usually tacos, and our adventures are leisurely walks and sometimes include farm animals. Life has evolved into something new and it’s pretty amazing.

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I do hope that you’re along for this new ride with me and my tribe.

xo

 

Sweetness.

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I have kept something from friends and family. I have not done this on purpose and some people do know, but for those who don’t, it is not because you aren’t important to me or because we aren’t close. I have kept this to myself because I didn’t know how to say it, when to say it, or how you would react. So, here it is…our Dominic was diagnosed with Down Syndrome. 

First and foremost, we are not sad, angry or disappointed, and he is more than we could have ever imagined. Our boys are the sweetest, most wonderful gift and we would not change a thing. The love we have for our boys is unreal. Dominic is totally healthy, without heart problems, thyroid issues, or breathing problems, and he passed his hearing test and has been a great eater from the start. We have been so lucky so far.

At this point, milestones are becoming more important and clear to see, so we are beginning to become a part of the DS community so we can use therapy and play to nurture him as much as possible. Lucky for him, he has a twin brother with whom he can learn and play.  

I’m happy to put this out there because maybe some other mamas will see it and share advice, or maybe I can help an expectant mama, and maybe it will help us connect more with the DS community. 

People’s reactions have been interesting, so by writing this, I’m hoping to avoid some hurtful and ignorant ones. First off,  we don’t want or need to “fix” Dominic. Secondly, we are not joking, so please don’t say “shut up”. Lastly, we are not sorry, so please don’t say that you are. I think I just want you to ask if he’s healthy so I can boast about just how healthy he is. Or maybe you could ask anything you would ask a mom of any 3 1/2 month old…does he like tummy time? Actually, yes, he does! You could ask if he’s smiling, so I can show you pictures. You could ask if he’s cooing, but you’ve been warned, I have videos and your heart might burst from all the cuteness. 

I don’t have all the answers, I just know how I feel, so I can share about our experience, and I’m happy to do that.

xo