One year!

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 giggles when tickled. Social and fine motor are right on target.

The areas we are concerned have not changed from my 9 (6) month entry. They’ve only gotten more pronounced as he grows. That said - he HAS shown improvement, which is so promising. It is slow, but there is development - so as long as that keeps going, I have faith that he’ll catch up to his peers eventually.

Low muscle tone: 

Marco has Hypotonia, or low muscle tone, which means physical things are harder for him. He cannot sit up straight, even supported. We lean him back to eat and have to constantly shift him up right as he slouches to the side. When he sits on our laps, he’ll flop forward if not supported. If sitting on the floor with us behind him, he can sit supported for 5 minutes or so before he really starts to flop. We’re working on building his stamina. On a bright note, he finally learned to roll both directions this past month (yay!) and now we find him all over the floor, stuck under all the furniture! We are currently doing 2x a week PT through early intervention and private-insurance, so hopefully that will continue to help him improve.

Speech/Communication:

My boy loves to coo and scream with joy. He is constantly making noise to get our attention - but that is where the communication skills stop. Typical 9 month olds can babble (bababa, gagaga) and use their hands to communicate in some way (lift them to be picked up, wave, clap, etc.), which Marco cannot. This is all related to his Hypotonia, I think. The ability to form your mouth in certain ways, and to purposefully lift and move your arms. We have a speech therapist 1x a week through Early Intervention, but will probably go through private insurance for this skill as well. He seems to be on track with his cognitive skills - is kind of understanding object permanence (knows to find a toy under a towel) and loves social games like peek-a-boo. So, he can communicate and be social - just cannot physically form words or sign.

Eating:

This is a big question mark for us. He is eating mush well enough - doesn’t choke on it, which is huge. That said, I don’t think he is eating “properly” because he doesn’t open and close his mouth around food - I need to kind of scrape it into his mouth. But once in, he gets it down no problem. The question is going to come when we start doing a bit more solid food. Things that require some smushing/chewing. He only has 2 teeth, so I’m not pushing this too hard - but I think this will be something we’ll work on with the Speech Therapist as he gets older.

Torticollis (or stiff neck):

We work on his stretches all day, all the time, but he still has difficulty looking left. He can look about 45% to the left, but has to use his whole body to turn beyond that point. This has caused him to have a flat head (because he only lays on one side, and babies skulls are formable until the soft spot closes up). He has a helmet to correct the shape, which of course makes it harder to sit/balance. This will also make it harder to learn to crawl and move - so hopefully PT will help work that out.

Growth (height):

Minor issue, but my boy is short! He’s 81st percentile in weight and only 7th in height. Again - not a big deal, but short stature has been connected to his genetic issues, so something to watch.

Lungs:

Big win for us - we had ZERO hospitalizations this winter! If you had told me that back in August, when we finished a 3-week stint for a common cold, I would have called you crazy. Somehow, with the help of a daily preventive inhaler and a dual inhaler combo for flair ups, we made it through to April! We’ll continue with the preventative care until at least 2 years old when his lungs will hopefully be large enough to move us out of the danger zone.

Can’t wait to see what comes next for my little man - but as my good friend Miley says:

There's always gonna be another mountain

I'm always gonna wanna make it move

Always gonna be an uphill battle

Sometimes I'm gonna have to lose

Ain't about how fast I get there

Ain't about what's waiting on the other side

It's the climb