6 Months Old

Rémi is 6 months old today and we've been home just over a month with him already!

This past month at home has been a busy blur. Between 2 follow up trips to SickKids, an emergency hospital trip in Huntsville, visiting the Orillia hospital for our complex care pediatrician meeting, nurses, physio and doctors appointments, there's been few opportunities to really relax.

We've been trying to make getting out a priority though. Our very first adventure was to the Farmer's Market to test out our on the go feeding system. We've managed to rig up our stroller and have since honed our technique!

Most recently we've been taking Rémi for on the go "picnics" at Arrowhead Park. After a quick dip in Nana and G-pa's pool, we quickly realized we had a water baby on our hands. We went for a swim in the lake at Arrowhead to cool off on our most recent adventure. Rémi enjoyed it as he enjoys most things.

He's an unbelievably relaxed baby and makes friends with his winning smile everywhere we go. Despite the extra materials we have to travel with, he's a treat to be around and makes things super easy for us on the go.

He's still 100% gtube fed, which to be honest is not where we thought we would be at this point. It's been just over 2 months since his surgery and both bottle and breast feeding are at a stand still. We think he will most likely skip this step all together and we are regrouping to focus on solids instead.

Our first occupational therapy appointment is tomorrow so hopefully we get some more guidance. Until then we've been encouraging messy play with purees. He's very interested in food, just has a hard time knowing what to do with it. In addition, he's got a hair trigger gag reflex which is not uncommon for babies with severe reflux and long gap EA. To help overcome this, he needs to learn to map out his mouth. We've got some great soft chew spoons that he plays with throughout the day. These help him get used to different textures and shapes and to learn where to put the food.

As always it will be an exercise in patience and allowing Rémi to take the lead with feeding. We will continue to give him every opportunity to explore without forcing it as this could lead to a full blown oral aversion or choking and aspiration.

Despite our setbacks with oral feeding, he is growing very well. He has finally made it onto the growth chart! He's officially in the 3rd percentile for weight. He's put on just over a kilogram in the month since we've been home and is now 3 times the size of his birth weight. An amazing accomplishment.

For now, he is getting everything he needs through his gtube. Meds and nutrition. While it's not always the easiest thing to manage, I am incredibly grateful for it as it allows him to grow and thrive.

We will be focusing most of our attention on his feeding progress and baby milestones these next few months. Plus of course enjoying his newest hobby -swimming