Long, Scattered, Good, Incomplete...

January 16, 2023

Leo had a check up with his PCP and it went so well! His weight was up. He's not huge, but he's on a "Leo curve." His length and head circumference are growing. His BMI is 50th percentile. And the biggest thing was that she didn't change his eating regiment. Let me explain why that's so huge.

First, I need to back up. Anticipating this appointment was a bit of a mental struggle. We had so many "check ups" where we heard "no weight gain," "weight loss," "no weight gain," "try this," "try that." We've had so many bad appointments. So when we haven't been to an appointment in a while and we are preparing for one, old emotions are stirred up. It's easy to expect bad news. And bad news--or hard news--from an appointment like this one means that the doctor tells you to start a completely new routine or schedule. I would work so hard to keep Leo on his set feeding schedule and when a new feeding schedule was thrown at us it was very overwhelming. I don't know if I'm explaining it well. It's just very easy to be scared that the doctor is going to say something that will rock my world, even in a smaller appointment.

SO. The fact that Leo is doing well on his curve, growing, and learning new things. And she didn't even feel the need to up his food intake means that we're at a good place. Like a good place. She actually said the words, "I don't want him to get huge." As in, if we give him more food he could grow too quickly. I was flabbergasted and delighted.

Now. We are going to see GI and nutrition this week. Again, haven't seen them for like 3 months. They might up his food, meaning up the volume that he needs to get (and thus the calories). I'm ok with that. I want their input too. But that won't take away from the joy of going to an appointment and hearing, "Nope. No changes. He's doing well!"

Back to our pcp appointment. She did ask questions about his tone and the medicine for that (baclofen). That's definitely her biggest priority right now is getting that more relaxed. He has been responding well to the baclofen and he's not sedated so we have room to keep going up. I am reaching out to his neurologist at CHOP so that it's a bit of a team effort to help his tone. We are in good hands.

In other news, Leo's meals currently take 55 minutes. That's a big deal, too! He eats 4 times a day. It used to take 1.5hrs each meal. That's a big part of my day and Leo's day tied up. Since Brad was home more around the holidays, he took some risks and upped the rate at which Leo gets fed. I have worked to up the rate incrementally by 5ml/hr after a couple days or a week or two. I had been on the same rate for a while because Leo had a stuffy nose and such so puking was very present. Well, Brad took a risk and bumped the rate up my 30ml/hr. And Leo didn't puke at all! Believe me when I say I was impressed, happy, and annoyed (that that kind of thing works for him and not me). Anyways, we have taken a couple of other big steps and he's eating in much less time. He's also puking so much less. A bad puking day is when he pukes twice. That used to be a good puking day. We can definitely see Leo's body adjusting to new amounts of food, learning to digest it more, and keeping more of it in. We are learning his body better.

Lastly, I will say that Brad and I got to visit the Women's and Babies NICU last week and it was so good! I want to elaborate on it more and also share Brad's perspective on it. We had very different experiences. But I really feel like that deserves it's own separate post. I want that to stand on its own. I'm so excited to share about it.

Thanks for caring and for reading. Life is so sweet with Leo. Whatever stressors come next doesn't take away from the good of right now. We know God's got us. And if I can speak into someone's life, I would just like to say that life isn't about being happy and comfortable. This world is very broken and the beauty is that God remains through it and has promises for after it.