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5 Years Old

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Marco’s 5th birthday! I cannot believe my youngest little man is now 5 years old. Especially not my little Marco, my miracle baby, my sweet boy. So here we go with his update - and there is SO much to update. Overall, he continues to be the happiest, most joyful and social boy around. People love to be near him and love to work with him. He truly makes life easier. I often joke that my special needs child is my easiest kid. Sure, we have a lot of therapies for him and we’re not sure how much support he’ll need as he gets older, but he’s medically healthy (thank goodness) and he’s so happy 98% of the time. When your child brings a huge smile to your face every time you interact with them, that is just such a blessing, and we are so lucky to have him in our world. Developmentally, his curve continues to grow farther away from his peers. He is still learning, developing, growing - so we’re feeling great about that - but definitely at a much slower pace than those around him. Where I used ...
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4 Years Old!

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Happy 4th Birthday Marco! Our sweet warrior is four years old today! Like every year, the passage of a milestone brings a mixture of joy and sadness as we inevitably compare him to a typical 4 year old. This year, however, his development has been so extraordinary and the absolute joy he brings us everyday counter balances any minor twinges of sadness we may feel. He is honestly the light of our lives most days. We love our other kids, of course, but Marco is still in the wonder-full stage of development, where everything is new and exciting. His energetic approach to life is contagious and helps us all so much as a family to get through tough days together.  His personality is his greatest super power, and will help him so much in a world where he is different and he may not fit into the typical lanes of life. He says hi to everyone, gives them a high five or a pound, he runs to greet those he knows and gives them big hugs, he happily waves bye bye to me and blows me kisses when I...
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3 Years Old

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Marco is 3! In some ways he is exactly what I expect a 3 year old to be - stubborn, adventurous, always trying to play with his brothers - in other ways he is so far from typical. In all ways, he is an absolute joy. Though we continue to have fear of the unknown, I’m starting to believe he’s going to be able to live a full, independent life. Our biggest question: how much does he understand? In most ways he seems like an average 1.5 year old if I had to put an age to his development. But then he’ll surprise us. Like when he sat down and started pointing and saying all the letters of the alphabet, or when he showed us that he not only can count, but recognizes all the numbers. Is he functioning at a 3 year old level but can’t tell us? Only time will tell. Some Updates: Physical Gross Motor Marco has a solid toddler walk - still using his full body and still a bit unsteady on his feet, but he’s gaining momentum every day and is pretty darn fast when he wants to be… which is all the time....
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2 Years Old

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I cant believe my baby boy is 2 years old! He certainly does not seem like a 2-year old and I’m ok with that. We really don't see a lot of other kids his age so I don’t have a daily reminder of how far behind he is. I know he is, but it doesn’t feel that way on a regular basis. He just feels like Marco. Except for big milestones, like a 2nd birthday when I realize just how delayed he really is. I’ve been saying he’s about 6 months delayed - if you take into account his prematurity, he’s around 21 months, less 6 months delayed, that’s around 15 months - which is roughly accurate for where he is developmentally.  Physically: We've got a toddler! Just this past week or so he's started to do a standard toddler beginner walk: falling when startled or changing direction or when he gets excited, etc. - so really close. He took his first steps around mid-January. My other boys went quickly from first steps to walking, but not surprised Marco is taking a bit longer. Almost there tho...
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One year!

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Unbelievably, Marco is one year old (9 months adjusted)!  Unbelievable, not because of the passage of time (which always seems to amaze) but because in most ways that matter Marco is nowhere close to the behavior of a 1 year old kid. In fact, I think the only thing that is “one year” about him is his weight - 81st percentile compared to others his age. My crazy-happy and easy-going baby is doing so well in so many ways - observant, joyful, social - but, heartbreakingly, the gap between Marco and typical development seems to be steadily increasing. First, the good - no, the amazing. Marco is by far the happiest and easiest of my babies. That is saying a lot, because my second was SO happy. He sleeps like an angel and only cries when he has poop in his diaper, wakes up alone from a day nap or we forgot to feed him (which has only happened a handful of times… but still - 3rd baby syndrome!) He loves any kind of attention, gives everyone the biggest smiles and makes the sweetest giggle...
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9 (6) Months- right on course

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9 months, 6 adjusted Happy 9 months (6 adjusted) to my sweet, happy, easy going boy. He is honestly such a joy and helps ease the frustration we feel with the constant bickering from the older two boys. I’d like to say he’s surpassing all expectations, blowing through milestones, but alas - he’s doing pretty much what we anticipated. Short story, he’s excelling in certain areas (fine motor, tracking, interactions, weight gain) and delayed in the ways typically associated with his genetic deletion (gross motor, speech, height). All in all, he is doing really well and we are so thankful - no real issues from his prematurity (which is amazing) and so far nothing too scary regarding his development. Some things we’re looking out for: Low muscle tone - our biggest concern right now and definitely a sign of his genetic deletion. In essence, he has weak muscles. For instance, most babies by 6 months can do a comfortable tummy time, lifting themselves up 45 degrees and leaning on their han...
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