Leo, Our Little Lion Man

      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

      Can I just say that it's crazy to have gone from posting multiple times a day and giving hospital updates to not having posted for like a month because life isn't as chaotic as it used to be? Whoa. We so appreciate everyone who cares to hear how Leo is doing. I enjoy writing these updates. It's nice to have one place to be able to tell people and it's also a little bit of a processing tool for me. I have tried to approach these posts as informational, mostly. But as we discover a bit more what stability can look like for us, I think that there is less information to update on. However, I still want to write updates. I know things won't always be this stable. They may get more stable. They may get less stable. Así es la vida. So these posts may turn into more of me sharing about life with special needs in our family and not only  how Leo is doing. Life with Leo teaches me a lot of things, and I enjoy a platform to share them on.      All of that being said, I&#