More Weight Stuff

    When this journey started, we began referring to Leo as our little fighter. After the MRI results, we really saw that Leo was most likely going to have a lot of challenges and potentially some pretty significant ones. One way that we looked at it then was that we'd have a lot to celebrate with Leo because every tiny step would be a big deal for him. Every step is an accomplishment that we have by no means been guaranteed. So here's to not forgetting that perspective.

    Leo can cry, yell, laugh, smile, respond, etc. in such a way that he did not when he was born. I asked many times for prayer surrounding his voice. And what a beautiful voice it is! Also the social awareness that he has which we did not see in the beginning, probably due in good part to the seizure medication.  God gave us a good thing. Leo is pulling his knees up to his stomach and his hands to his face/mouth which used to be nearly impossible for him. His muscles are learning! He turns his head to both sides. He can take food orally. He has gained weight (although not much recently). He has taken purees by mouth. Oh wait. He can BREATHE on his own! We can care for him at home. Also, a step that I feel I have made is that I can get insurance information and schedule appointments and adapt to news much better than at the beginning of all of this. We are learning to navigate!

On to this week...

    Our appointment at the pediatrician's on Monday was not what we wanted. Leo gained better than our last check up, but nowhere near what we would hope. So we are still waiting for answers and trying to cover all of our bases before the GI doctor appointment at the end of the month. That is where we are hoping to get some real clarity (although you gotta be careful when you hope for that, right?). Our pediatrician and neurologist have been in contact. We have a video follow-up with the neurologist after the GI appointment. Our next drive to Philly is still scheduled for beginning of January. Since starting some medicine, Leo's spit ups have been way better. Praise the Lord! So steps have been made. But we can't really say much new at this point. Leo may just be on his own trajectory.

    Please pray for answers--and/or the grace to trust God with what he gives us in that regard. We have a lot of appointments coming up, and they could potentially be big appointments. It's hard to watch our expectations--well it's really just hard to know what to expect. Part of us feels like we have to brace for potentially big and hard news. The other part of us is telling ourselves that we're overreacting and we need to relax. In my understanding, some of this is called being a parent. You worry, right? It's what you do. And with Leo's brain injury, there really is more of a possibility of challenges. But the truth still is that God knows and is more in control than possibilities and expectations. I don't know if all of that makes sense, but just trying to put to words where we're at a bit. Your prayers are cherished.