September 24 Update

It’s been a busy couple of weeks with Mattie. While he’s still pretty stable health-wise, he’s got a lot going on and none of his latest tests/appointments have given us the news that we were hoping for. So here’s a little update on where he’s at.

Matthew’s Sleep Study results showed that he has moderate obstructive sleep apnea. He had frequent oxygen desaturations that were down in the mid 80s throughout the night, but carbon dioxide levels were normal, which was good news. Because of these results, his pulmonologist wants him continuing oxygen therapy at 1/8 liter/minute while he sleeps for the next 9-12 months, at which time he will do a follow up sleep study. We were obviously hoping to stop oxygen therapy completely but at least he doesn’t require any additional interventions at the moment. His pulmonologist’s assistant also gave us some good tips on how to keep Matt from yanking off the cannula in his sleep.

Upcoming Surgery: Matthew had an ultrasound for a possible hernia last week. The results came back negative for that but did show that he’s got something going on anatomically down there that, according to his pediatrician, will most likely require surgery. He has a consultation with urology in a couple of weeks, so we will see what they say.

Helmet Update: Matt’s DocBand has been giving him some trouble. He started wearing it a few weeks ago, but he’s never been able to wear it full time (and never at night) because he keeps failing the skin checks. Every 3-4 hours we take it off and check for any redness on the skin that does not resolve in an hour. He’s had two spots above his right ear that consistently take longer than an hour to go away, so the technicians finally decided to just start over and get a new band. That was pretty disheartening, but at least he gets a break for a week while the new one is made 😆.

Development: We knew Matthew would have developmental delays due to his DS diagnosis and also his prematurity, but honestly for the first few months he just seemed like a normal baby in that respect. Within the last month or so, those delays have become more apparent. Matt works with several therapists every month to help him with his various developmental needs. He has 2 occupational therapists, a developmental specialist, a feeding therapist, and now a physical therapist.

Right now he’s working on transferring objects from one hand to another, reaching and grasping objects, and patting/banging on things. Kiddos with DS have a tendency to need more motivation and hand over hand guidance with these types of skills/gestures. They often prefer to just sit and watch and smile. 😆 So we have to be a little more intentional with all of these little things that other babies usually do on their own.

We met with Mattie’s physical therapist for the first time this past week. She was really great and will be working with him at our home twice a week for the next several months. He has a lot of work to do. His lower muscle tone (from DS) and prematurity both contribute to him being pretty weak. So the main PT goal right now is helping him build muscle strength so he can sit up on his own and eventually be able to crawl.

Right now in particular we are helping him learn to pull himself up from a laying down position to a sitting position (while holding someone’s hands). We don’t get a whole lot of help on his part yet but he does put his chin down and give some resistance, so that’s a good start.

We also learned this week that because he has hypermobile joints (super flexible), he will most likely neede leg braces as he’s learning to walk. I hadn’t even thought of that. But we’ve still got a while before he’ll need those.😛

Feeding: Matthew’s been eating quite a bit more lately but he’s also started having more choking episodes, so we’ve had to adjust his feeding plan a little bit. We’re gonna try thickening his milk even more to see if that helps. He’s always been a little wonky with his feeds…faster breathing, uncoordinated suck/swallow/breathing, watery eyes, etc…but something seems different, so we are just trying to figure out what that is and what to do about it.😩

Apart from all of his special needs, Matthew is doing well and is the sweetest little man.

He’s been a bit more fussy at times and his nap schedule’s been a little off since our move, but he is typically a happy, giggly, content little fella with the sweetest disposition.

He loves to snuggle and touch my face while he’s drinking his milk.

He thinks it’s funny to be held up in the air.

His smile and laugh are just the best. But his pouty lip when he’s sad is enough to break your heart.

He’s very ticklish and usually likes to be tickled.

He is very patient with all the extra little hands who like to help take care of him

…and with all of his appointments. He’s pretty adaptable and resilient…but he does have his limits. 😆

He makes the cutest little growling noises.

He loves his hands and sucking his thumb.

He does not like loud noises. His startle reflex is less exaggerated than it was when he came home from the hospital, but it’s still pretty intense.

And he is still the best sleeper at night. I will love him forever for that reason alone 😉 😆

Basically, he’s a little angel who melts hearts wherever we go. 🥰