Leo, Our Little Lion Man

 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...

      Leo has a buddy. Leo and Isaiah are different in a lot of ways, but also very similar in special ways. They get things that not many other people get about them. From a mama's perspective, a practical way to explain it is this: Leo and Isaiah are about 6 months apart, non verbal, not mobile, and g tube fed. They get each other. And they are so fun to see hang out.      Isaiah's mommy and I were having a coffee date with our boys. During our time, I had a sweet realization of something that I am coming to understand more and more in this stage of life. God is continuing to teach me a lot about Leo's therapy, Leo's body, and engaging with others.      I used to freak out every time Leo missed a therapy session. It felt like a big no-no. Brad and I didn't want to be not prioritizing therapy. Making a call between therapy or another activity was hard. It was just hard to prioritize. And I think it felt like any time prioritizing something o...

    Recently, we've been getting this question more. And I want to be honest, I don't quite know how to answer that question. I believe it is asked with sincere desire to see the difficulties we/he have, and to seek to understand something that is not experienced by the person asking. But it's a little weird to answer and I want to try and explain why...     When Leo was younger, this felt a bit more applicable. We had specific questions that we were trying to answer and there were still some typical milestones being met. I think that's the biggest thing. We had specific questions that we were trying to answer. Leo was failure to thrive. We couldn't travel without him drenching himself in sweat in the car seat. The stroller was a similar story. We were seeing new specialists or finding another doctor. We were starting a new therapy, practicing a familiar one. Etc. Etc.      And in our current stage, I don't feel like we have as many or as pressing spec...

 If you would like to receive notifications--I think it's emails--when I post on here, you can find the "follow" button on the left hand side of the page on the blog! It's under the menu options.  This is to help if you were wanting to continue to follow even though the blog posts won't be on facebook anymore.  Please let me know if you have any issues with this. This is pretty fun, making my blog "subscribable". But new to me, so, yeah, let me know if you have any issues. 

    I don't know why I'm having a hard time starting this post. So, see I've been floundering with writing another update because I have this internal conflict. One side says, "I need to talk about Leo, how he's doing, and nothing else." The other side says, "There's not much to update on so do you need to keep writing?" And, yet, another side says, "Your friends read this to hear about Leo, not your thoughts."     But, in reality, this blog has changed its shape. It started the night Leo was born. It was a way to tell our community what was up for Brad, Leo, and me as the world as we knew it had shattered. It was way easier to write one post than send a thousand texts (and that's zero complaint about having community and people to text). It was literally the medical updates that doctors would give. And throughout Leo's life, those have gone from multiple updates in a day, to multiple appointments in a week, to months and months...