Leo, Our Little Lion Man

This is a big word vomit. Here's how caring for Leo is going! Thanks for reading.      More of the same means feeding, weight, and puking stuff. He's continued to gain weight. Why does that not feel like as big of a deal as it should be to me, considering where we've come from? He's continuing to gain weight! It's not always a huge jump, and some weeks it's more of maintaining, but his curve is going up. We've continued to have puking issues since leaving the hospital. He also has six more teeth, and more coming, I believe. Right now taking bottles by mouth isn't working. I can give him about an oz by mouth, but the rest goes through the tube so that he doesn't puke it all up.      If I may take a moment to describe his feeding in depth right now. There are many ways to feed him. He takes a bottle and he has the tube. If he is eating through the mouth, he can have formula in a bottle, formula with oatmeal added, or formula with oatmeal blended into i...

Leo had OT yesterday, and PT and a pediatrician appointment today. They all went really well and I’m a bit happy drunk over having 3 really good appointments/sessions. In OT he practiced sitting up and holding his head up. He did some stretching and also some oral stimulation to practice moving his tongue intentionally. In PT he laid on his side and was reaching for toys and pulling things to his mouth. It’s also noteworthy that he laid on both sides really well (usually one side is significantly more uncomfortable for him). He also did some holding himself up while she held his knees down (like in a crawling position). And she said his body felt relaxed/flexible—basically pretty easy (as far as Leo goes)—to work with. Then at his appointment he was up in weight and the pediatrician said that Leos growth chart hasn’t looked like this since he was 2 or 3 months old.  So even with the puking, he’s been putting on weight. He has 3-5 teeth coming in up top. He has his good nights and b...

      Why does this feel like a new chapter to me? Things are always changing (kids, right?) but for whatever reasons coming home from our last hospital stay has felt like a new chapter. So how's it going since the last post?     Nights are still inconsistent but slowly getting better. Leo has a new tooth and another one on the way! He's continued to gain weight. He emotions and expressiveness continue to get bigger (don't know how that's possible). He's also been more pukey--which is not fun. I've made a lot of calls and we have appointments and such in the works.      The puking. It's frustrating when it's worse for unknown reasons. However, he has still been gaining weight even with the extra puking. I find myself developing theories, growing in confidence to monitor his eating and weight, taking what the docs say, and making it work for us. I think having kids does this to you. But I can for sure say that having a medically complicated kid has...

      We finally came home. We wanted to for so long. But what does being home entail? We knew it would be an adjustment, and we're only two days in.      Nights are not silent. Leo is getting used to sleeping on a different surface and sleeping while connected to the feeding pump is an adjustment for his body, too. Sometimes he wakes up with coughs and gags and a spit up. Other times he can be awake and laying down (horizontal) and getting fed through the tube and not spit up. I am hopeful that we can get to a point where he can fall asleep on his own while connected to the pump and even if he wakes up not put me on edge by waiting to hear a cough and gag. I don't know if I'm explaining that well, but waiting to hear him start to gag is very stressful. I don't think we'll ever get rid of this stuff completely, but we're working on managing it by understanding his body more.      Nights aren't completely quiet around here, but we are very hop...

‘Nough said

 Praises: Leo started a new formula yesterday and we haven't had any problems.  Leo's gained weight again. His puking still seems to be managed. Brad and I got away for 24hrs Friday into Saturday thanks to Nana and the nurses taking care of Leo here at the hospital.  Leo slept through the night last night (here's to hoping he does tonight too). Brad and I appreciate the questions the doctors are asking, decisions they're making, and feel very heard by them. We've had the same (daytime) nurse since Friday and she's pretty freakin' cool. It really does look like we could be home soon (though I'm very aware things can change quickly). Jesus rose from the grave! Life doesn't end with this earth. We were created with purpose and our Creator CARES for us! The victory is ALREADY WON.  I'll leave you with some pictures and a line from our sermon this morning. "If your hope is that things are going to get better, then you have a misplaced hope. Our h...

      Today is a good day. We have actually had two good days. There may have been more right before that, but I can't remember that far back right now. Days at the hospital turn into a blur.      Leo has gone up in weight for two days now. He has had less pukes (which are smaller). He is tolerating 10 hours on the pump overnight. He seems to be fine with this new formula and the new medicines are helping, we think. By this, I mean that I can now lay him down while he is awake and getting food through the pump and he doesn't puke. This was not happening before coming into the hospital.      So there's a couple things going on right now.  One: he is still getting used to two medicines that help his digestion (to put it briefly). They are reconfiguring the schedule of when he gets what medicines in order to make it easier for me when we get home. Reworking the timing of his meds might throw him off some. We're not sure.  Two: we need ...