9 (6) Months- right on course

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 hands for an extended amount of time. This is critical for developing the ability to crawl. Marco can lift his head for short periods (less than 1 minute at a time), but cannot do much more than that. Other flags: He cannot sit, even with support - he just slumps forward; his head still needs to be supported a bit as it can flop randomly; he can barely roll - did one direction from belly to back, but does it very rarely. We know this is going to be a continued issue with Marco, I’m just hopeful he catches up by 2 and can go to regular school. Other kids with similar conditions to him didn’t walk until 4-6 years old, and some still can’t. Low muscle tone can also affect swallowing, eating and speech.

Eating - he continues to thrive on the bottle, no tube needed! That said, we started him on solids the past few weeks (doctor recommended) and it’s been slow going - pushes out food immediately, doesn't really swallow unless he’s sucking on something like the spoon, etc. I’m not quite worried yet, but if he doesnt start to improve it may be a sign of something bigger. Some kids with similar stories never quite learned how to use their muscles to chew, so they are still on a mush diet - even as school children.

Communication - similar to eating, I’m not fully worried yet, but I’m getting there. Most 6 month olds are babbling (babababa, mamamama) or at least doing combined vowels (ahh ooo). Marco grunts, blows raspberries and makes a single vowel noise (oooo). We’ll probably start with a speech therapist after our next Early Intervention evaluation. In other areas of communication he’s doing really well, though - he turns to voices, tries to copy our faces, laughs when others laugh, enjoys reading books (a lot) - so we know he’s mentally there and that even if he doesn’t talk, he should be able to communicate in other ways.

Torticollis - a fancy way to say he has a tight neck and therefore it is hard for him to look left. Two issues come from this: 1. serious flat head, which we’re fixing with a helmet to reshape his head as it grows. And 2. It is harder for him to do tummy time and learn to roll. Combined with his low muscle tone, it may be difficult to correct. We’re doing physical therapy with him every week and I’m seeing improvement, but it’s still prominently an issue.

Height/Weight - my meatball is short and fat. This isn’t too big of a concern, short stature is a common occurrence with his genetic deletion, but I’m still hopeful he’ll catch up. For a 9 month baby he’s 98th percentile BMI, 62nd weight and less than 1st percentile height.

Breathing - lastly, he still has chronic lung disease (weak lungs) and most likely will until he is around 2 years old, so we’re still super concerned about any kind of respiratory illness. So far this winter he has made it through 3 colds with the help of a preventative inhaler and an albuterol inhaler, and only had one brief ER visit. With COVID numbers spiking heading into the heart of winter we know there is still a long way to go… but if we can make it to April with no big issues I’ll be the happiest mama on earth.