Leo, Our Little Lion Man

      This one caught us off guard, and it’s been an interesting process.  Our nighttime nurse...left. Our last night with her was the 17th. There was miscommunication between me and the agency so I'm not exactly sure when she gave her notice, but we found on the morning of a Monday that she wasn't coming that night.  Honestly, though, it was God's timing because I opened the email right at the beginning of my virtual counseling session. It was incredibly healthy to talk through those feelings and our new situation with her. Brad and I are not angry with our nurse. It's just a little disappointing and sad. We know why she left. We understand. We are so grateful. She really did change our lives. She gave me my life back--8 months ago now. You may think that sounds like an exaggeration, but I am confident it is not. She worked with us through formula pukes, colds, an ER run, more colds, a move. She cared for him in a pack and play, bending down to him so that she ...

      Finally getting around to getting these thoughts written down!     Ok. So where to start? Well, here's an interesting note about it. It was a more emotional experience for me than for Brad. It just did something different for me--good things for both of us, but completely different.      Driving to Women and Babies the feelings got real . We both felt nervous, scared, shaky, and just kind of burdened. I asked Brad before we went in, "Why are we doing this?" not because I was questioning doing it, but because I was sensing that it could bring up some dark stuff and I wanted to be able to speak the truth to myself about why it was necessary. The answer to that question came to me later in the visit quite clearly.      Once we got there, the chaplain came and met us in a family room. I don't know if it's right of me to use names when I haven't gotten specific permission, so I will just keep names out of this. The chaplain facilit...

      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 ne...

      Friday went so well!! My sister-in-law, Amber, came into Philly with me and we were feeling very accomplished at all that we could do before 12pm. Leo's first appointment was at 9:15am and we were home around 2:30pm.     Getting the EEG was interesting. We got in the room and I laid Leo onto the bed. The lady (I don't know her job title) then said she had to swaddle Leo so that she could attach all the wire things to him. He did not like that. That was honestly the hardest part. He wasn't completely losing his mind. He was doing better than I would've thought. But he was not happy. I held his hand, put a teether in his mouth, breathed on his face (I know it sounds weird, but it can help calm him down) and sang to him. They helped a little bit. While this was going on I asked the lady about results. She said to expect them in about a week.      So Leo stayed strapped up for maybe 3-5 minutes of the EEG. Oh. I forgot to say that while she was ...

      Leo and I are headed into CHOP tomorrow for an EEG to look for seizure activity. We had an "episode" about a month ago where we thought, "Was that a seizure?" With Leo's history and being high risk for seizures, our neurologist is talking with some other members of Leo's team and also ordered an EEG.       Seizures is a big word. It's hard to not be in denial, but also not worry about every little movement. Ultimately, God is in control and anything that they might tell us doesn't change who Leo is (got that from a friend, a medical mama too). I may be able to expand on this more later. We don't want seizures. But even if they are there (or come) God is bigger. And seizures range in kind and severity that there's just so much we can't know right now. Working on surrendering it all to God. He's bigger. We just gotta be faithful in caring for Leo. And we just have to do one day at a time. If this sounds super serious and gloomy, I...

We always say life looks different  than how we'd imagined it. And different isn't bad, but it can be hard. We are learning to grieve the things we hoped for, celebrate them in those around us, and accept our normal. It's not a bad normal. It's just different. These are some things that are "normal" for us that I don't think are normal for many around us. I'm grateful for a space like this blog to be able to share about some day-to-day things. Compass Care appointment There was a butt in every one of those chairs. Doctors, nurses, residents, a social worker etc. Compass Care works with kids and families who are complex cases. "Complex" is defined as having 3 or more specialists. They talked through each area of Leo’s care to see if we were lacking anything. They help advocate for us, schedule things, reach out to people, and point us to resources. They look at big picture and not only for Leo but also for us as a family. I don’t know if I’m e...

     Leo and I just took two days off of therapy. We didn't do time in the equipment unless it was fun. We didn't spend extra time in boots if it was more cumbersome. We didn't reach for buttons or eat with a spoon. We planned the days based more on what we could do to help us and Daddy get ready for Christmas. We planned them around Leo's relational, social, and expressed needs. We planned them around rest and fun.      Therapy can very easily get me into a weird mental space. I never feel like I have the words for this--I just want someone else who has experienced it to find them for me--but I'm going to try it anyway. Therapy adds pressure to life. I'm not talking about the therapists or anything like that. Our therapists encourage me and Leo, tell us to take breaks, care about the rest of what's going on, etc. They work with us. They don't make me feel bad when Leo and I haven't worked on something since our last session. They're very underst...