Leo, Our Little Lion Man

      I am working on another post with some pictures and more like a journal of our time here. But right now I need to try and get some sleep. But I would like to update anyone looking for an update!     We are around 10 hours into the 24. This has gone so much better than expected. Leo was in mostly happy moods until right before falling asleep. It's not fun seeing him in the EEG head wrap. Feels like he's a really sick kid. And it's not fun pressing the red button when you see behavior that could be seizures. And then it's really not fun to think about neurology coming tomorrow and possibly telling us about all of the seizures that he's having. The EEG is kinda just in your face and ugh. But Brad was here the whole day. And we've had really cool nurses.      Prayers appreciated for the night. Leo is asleep and then almost waking up with some pushing and fussing. I think he's getting frustrated with the head garb. All the wires plus his night ti...

      Well, the past two weeks have carried a bit of drama for us. I meant to write out more of my thoughts in the moment, but the moment passed me. So, a bit of a long story short: Leo's pcp wondered if she was seeing seizures.     That lead to doing a 30min EEG. The results of that EEG showed some "abnormalities". Neurologist from CHOP would like a 24hr EEG to give us a better picture of what's going on in his brain. It seems to me that seizures are not as black and white as I thought they were. There has been talk of "will this weird brain activity turn into seizures?" There's just a lot of looking and assessing. No one has said that the 30min EEG caught "seizures". Also, his neurologist said that she would not feel comfortable prescribing seizure meds without doing a 24hr EEG.      So tomorrow morning we are headed to the ED as that is the quickest way to get admitted for a 24hr EEG. Today was a bit hectic in trying to assess with his neuro...

      Hello, beautiful people! I'm coming on here with the intent of being quick because I am headed to bed and sleep is important :) We have an EEG scheduled for Leo this Wednesday. Would you cover that EEG in prayer as well as tomorrow leading up to it, specifically for me and anxiety anticipating the EEG? So, an EEG is to look for seizure activity. This isn't as dramatic as it sounds at the moment but seizures for Leo are a huge fear of mine. His PCP has twice now wondered if she witnessed him having a seizure. It was essentially him being very still. I have so many reasons in my head why I don't think it was. And, honestly, I think there's validity to a lot of them. However, she's doing her job in looking into any time where the question came up, "was that a seizure?" With Leo's history, you have to take those seriously. She is definitely of the mind that it could be nothing, but also thought it would be good to check it out.  The other thing about...

      So recently, this fear has been creeping up on me. I believe that it's part of grief. Grief is an old friend of mine. She really is. As a mother, grief isn't with me all the time anymore. But we still talk occasionally. When Leo's birthday came up this year, Grief didn't really visit me beforehand. I didn't cry every day leading up to it. I wasn't overcome with all of the wishes I had for my kid that can't be realized. I wasn't painfully aware of the timeline on the day of. This year Grief dropped in on Leo's birthday, but didn't stay for the party.      On March 7th, the anniversary of the day that I went into labor, Grief came and sat with me. We talked about what labor looked like and felt like. We talked about how I did in labor. We talked about the amazing things that my body did to birth a child. It was nice to have someone understand that on the day Leo was born, I felt like I hadn't done enough. Because Leo needed more help afte...

 Man, coming back on here after months is really not an easy thing. There's so much to say and at the same time nothing to say because nothing is happening at the moment.  So here's the gist of where our family is at after the winter:     We had wonderful holidays. Leo loves ripping paper and expressions from people so opening presents (not even his) is just a wonderful time. He continues to learn new things and grow in body control and expression. We are excited as we learn to communicate with him more and do our best to teach him to communicate. It is very much a team effort and we are so grateful that we can communicate with him more and get his preferences.      After the holidays we had some 5 or 6 weeks of sickness in our house. I think it's been a bad sick season all over. But we were very much feeling it. Thankfully, nothing was too terrible. We're also grateful that we never had 3 of us sick at once so usually there was a parent who has not fe...

      We have two pieces of equipment, but several things that serve as adaptive gear for Leo. I'm still learning the definitions. Or why is it important to make a distinction, haha? This is an update on the adaptive things that Leo has been having a harder time with that we hope to incorporate more into daily life in the future.      Stander: pretty self-explanatory. We've had it for almost two years, I think. When we first got it, I was under the impression that I'd be putting Leo in it for meals regularly so that he could be held up while he ate without me having to do it every time. Well, not quite how it worked.      Leo's body's natural way of moving is into an extension. His head turns to the right and he almost tries to push it further (to looking behind him). His one arm extends, the other bends. His hips thrust forward and his legs go straight, like with crazy strength. And his feet point and turn in. This is a little weird to descr...