Leo, Our Little Lion Man

      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 hopeful that they w

‘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 to see a couple more days of good weig

      We are back.     They transferred us to the main campus in Philly yesterday. They determined at KOP that they wanted him to see neurology to look into his movements. He works himself up and pukes and he also burns a lot of calories. They also wanted to look at the possibility of a j tube for feeding (which goes straight into the small intestine). If he needs a j tube, that procedure has to be done here. To be seen by GI to determine if he needs a j tube has to be done here in Philly as well. They may also do some more tests which they couldn't do at KOP.     This is now looking like two more weeks here.....or something like that. My mom is coming and will be able to be here at the hospital with me, but Brad is now back in Lancaster for work. He'll come out on the weekend. But it's hard for him to be away knowing that it's not easy at the hospital.      Today I spoke with OT, PT, neurology, GI, hospitality, rehab medicine, and some other docs. They came in to look

      This morning I woke up feeling pretty discouraged. But today has gone better than I expected. Here's the gist: we are working on figuring out how much Leo can take comfortably through the pump overnight in order to lessen the load of the bottles during the day and to do it in a manner that allows his stomach to take smaller feeds at a time because it seems like filling him up too much brings vomiting.      I have been feeding him by bottle today which we are very thankful for. He is still on the new formula--which has more calories--and he seems to be adjusting to it. Praise Jesus! He is not spending all day agitated. He had a big puke last night after we tried to up his dose over the pump so after a break they made the dose lower again. There's some medicines they are discussing with us as well that would help his reflux and digestive system.      Ok. There's so much I want to ask for prayer for, but I'm going to do it by kind of explaining where Brad and I are a

Today was long. I think this will be a concise update.  We got the Upper GI test done and it showed that his swallow is good, his anatomy is good, and his stomach is draining as it should be. So that’s good but it still doesn’t give us any answers.  Today at 5:30 we started him on a 24hr feed through the tube with a new formula. This will give him a—hopefully—manageable amount (that he won’t puke up) per hour and also the desired calories over 24hrs. We will see how he does on tbjs and then decide how to move forward. The goal is not to have him on 24hr feeds. But maybe to work toward something overnight to make sure he’s getting nutrition he needs and then during the day we can work on really positive oral experiences.  Hospital stays are exhausting. Talking to so many specialists and communicating all of Leo’s issues to each so that the plan works for him. It’s a lot. We have been very grateful for the team we have had here. There are two doctors in particular that we really feel hea

      Once again, my brain is scattered, but we would really appreciate prayer and would love to tell you what's up here.     The summary: we had two appointments this week, cerebral palsy clinic and the post op surgery check in about his feeding tube site. We are also preparing to be admitted to CHOP in King of Prussia tomorrow because of Leo's weight.     So, Philly trips. The cerebral palsy clinic was AMAZING! It was so cool to talk to people who were very familiar with kids like Leo.  In other appointments it has felt like something was missing. Meaning, we can talk about ways to help reflux but Leo has muscle tone and movement issues that make their suggestions not doable. So, it was just really good to talk to people who were like, "Yeah, nope. That sort of thing won't work for Leo." We spoke with a physical therapist, occupational therapist, muscle tone doctor, speech therapist, social worker, and got an xray of Leo's hips done. Sidenote, they all menti