2 Years Old

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 though! He can climb really well, can almost run holding our hand, cruises along everything and is starting to get into a lot of trouble around the house - which makes me happy. Fine motor skills are still a work in progress, but we’re working on things like stacking small blocks and using a fork. He has trouble turning his wrists and using both hands simultaneously (i.e. holding an object, then using his other hand to manipulate it). Things that we took for granted with our older boys. Things that babies learn pretty quickly. He’s getting SO heavy, so really hoping we can stop carrying him around soon.

Speech: He’s nowhere near where he should be for speech. He is still in the single syllable babble (mamama, nanana, dadada, etc.) which is a 6-8 month skill. Sometimes we get a double constant/vowel (ahmababama) but it’s rare. He has a couple of “signs” - not official ones, but we understand what he wants. Mainly he points or screams to let us know he wants something. He doesn’t really sign to us unless prompted, and even then, I’m really not sure he is doing it to communicate (vs. doing because we said the word More for instance). We’ll say More? And he’ll rub his hands together (real sign is to bring your fingers repeatedly together in an almost fist). We’ll say All Done? and he’ll move his fingers (real sign is to flip your hands back and forth). He claps (not great, but he can do it), waves, blows kisses, lifts his hands in the air for “hooray”, does wheels on the bus, slams his hand down for “beep beep”, rubs his belly for “Marco’s turn” or “Marco”, smacks his lips for “yum yum”, leans into us for a “hug” or “kiss” - so he can do a bunch of movements to acknowledge that he understands what you’re saying and can respond.

Social: he is a social butterfly! Loves people so much, is comfortable around everyone, loves to wave and laugh at strangers. He also LOVES games - peek-a-boo, where’s Marco (form of peek-a-boo) and chasing (us chasing him, him chasing us) are his favorites. He also loves to threaten to throw his food on the ground - we say no no no - he smiles and puts his food back on the table. He also LOVES books, like most kids - but he’ll get all excited and do this tense thing with his arms and face. He’ll point to the book he wants - very demanding if he doesn't want the one you picked - which is an excellent sign. He can’t speak, but he gets his desires known and is following social cues.

Health: has been pretty good! We haven’t been in the hospital since a 4-5 day stint in the fall, even though we’ve had lots of colds, so fingers crossed we’re over the hump. We're doing preventative inhalers twice a day, which I think has made a big difference.

Overall, he is really doing fantastic. And I am LOVING this stage in his development. He’s really showing his personality and is such an absolute joy to be around. I keep trying to remind myself of the fact that extra baby time is a good thing. He’s my last little man and I need to soak that up. Really, if he were developing typically, we’d be way past this phase by now - almost into the terrible toddler/pre school phase - which my middle child is still in - so I’m very grateful that he’s developing as he is. Grateful seems like a strange word. Of course I would rather him be “normal” but with all things considered, we have it pretty good. 

We still have no idea what’s to come, and that’s scary. He could develop autism, he could stop developing at the same pace, he could never talk, he could get seizures. So many things that happen often with chromosomal differences - things that could still happen to him - we just need to keep thinking positively and know that we have the BEST support team in the world.

Current therapies and doctors

Physical Therapy (2 different therapists)

Occupational Therapy

Special Instruction for communication

Speech (2 different therapists)

Pulmonology - lungs

Orthotics - sure step ankle support for pronated feet

Neuro and Ortho for his torticollis which is still present, just not as obvious

Dropped feeding team at CHOP! He’s all good there.