August

   This post has been written over the course of several days. If this update is scattered or confusing time wise that's why. There's a lot to praise God for. It feels like things are going well around here. Here's my word dump. 

         Leo's weight is a bit concerning. He recovered from covid, got a nighttime nurse, switched to whole foods, and went from 4 feeds to 3 feeds a day (which I am now calling meals). We have also been moving from 1 to 3 meals of whole foods a day, have been upping the amount that he gets at each meal, and upping the rate at which he gets the food. Little lion man has been adjusting to a whole lot these days, specifically in the eating and weight area. Oh! And he's gotten another molar, another molar coming in, and another front tooth coming in. Big note: he has yet to puke up the whole foods. I'm serious. He hasn't puked up the whole foods. And he can be on the ground, in the car seat, held, sleeping, agitated, etc. Now, it currently takes about two hours to feed him (through the tube on a pump). We are working towards being able to take a whole feed in one hour in this manner. As we feed him faster, I expect some pukes to come. But the fact that he hasn't been puking at all so far.......I don't think the pukes will be what they have been. 

    ALL of that to say, our dietician said that she wants to give Leo some more time on his current schedule of feeding before we adjust. And she isn't panicking. She has told me more than once, "We will figure this out. I'm not going anywhere." This is seriously the support that we needed and were missing. I'm just astounded by the difference it makes to have medical support. And I don't say that to trash our previous GI doctor or nutritionist at all. There were several factors that impeded our communication with them. I am thankful that we are having more consistent appointments, good communication, and more pieces fitting together. 

    Yesterday we met with our new GI doctor for the first time and I am very happy. I really like how she approached Leo's issues and how she communicated with me. Big answer to prayer. 

    Sometimes it’s nice to have a break from therapists because seeing Leo after a longer absence gives new perspective. Our vision therapist was here after three weeks off. She was super impressed with the alignment of Leo’s eyes. In my understanding, as Leo takes in more visually his brain learns how it can process it. The eye doc said that interacting with him and taking him places was the best therapy. Let me tell you, I know this kid gets the best therapy! 

We’ve also been noticing Leo seeing things farther away than we expected. The other day I was sitting maybe 3 feet from Leo on his grampy’s lap. Leo was falling asleep, really needing a nap time, so I picked my phone up to video his heavy eyes. Well I couldn’t lift my phone without getting this face!

First off—this kid loves the camera! Yup. He’s mine. Second, holy crap he can see my phone from that distance and clearly knows what it means. Pretty cool!

We had our first session with a speech therapist from Early Intervention. I think I mentioned our other speech therapist on here. So I think we are going to see one speech therapist for feeding support and oral motor skills and then this one for communication skills. As long as insurance and schedule accommodates that. Just this morning Leo saw the other speech therapist and she was very impressed with how he ate puree off of a spoon. We are very thankful for a good session. 

    The adaptive stroller and stander have both been approved! The stander will get here end of next week. The stroller is scheduled to be delivered to us at the end of the month. It is possible that it will take longer to get all of the parts so that could take longer. However, we are approved and don't have to fight insurance for it so that's a huge praise. 

    We still have the same goals in physical therapy, working on core strength and neck and head control. It can be discouraging to feel that we have been working on the same things for so long. Progress is very hard to see in the day to day stuff. However, we can see Leo getting stronger and we are understanding his movements better. Tummy time is a hard one for me to do with him. I know it's really helpful for him, but he doesn't like it. It's hard when he just arches really forcefully. And sometimes his tube site seems sensitive. It's just hard to know how hard to push him sometimes. We have been working with his orthotic boots now too. They hold his feet and ankles in a weight-baring position. I'm still learning to put them on. And Leo's getting more and more used to how they feel. 

    I don't think that I've talked about nighttime nursing yet. It's going really well! Leo has been sleeping through the night more. And one of my biggest praises is that last night he was up for 2 hours BUT our nurse said that when she held him he was much more relaxed. He is getting used to her! But also, yay for Leo sleeping better. And Brad and I continue to feel comfortable with our nurse. Very thankful for who God gave us. It just fits. 

    And as my signing off, here's some pictures because I CAN'T HANDLE LEO'S CUTENESS