Leo, Our Little Lion Man

      Thanks for praying us through our big week.  The past couple days has been information overload, for sure. Here's a big update, keeping in mind that we have a lot of conversations to have in the next week and things could change a lot from here. We're not certain about our next steps to take, but we are pretty confident about the direction we are moving.     First off, eye appointment! It was not as discouraging as we anticipated, however it does seem like his vision is not super functional. But there's so much "wait and see". As far as vision goes, the eye doc says that Leo seems to have more peripheral vision and not good central vision--because he doesn't look at  you. He also said that Leo has eye movement  issues, which is different than vision issues. We can see that the brain damage has affected his muscle coordination and it would appear that it has affected his eye muscles  as well. It was clear to the doctor that Leo's eye mov...

  Praise God, Leo has a good heart! Everything is working well! His weight gain issues are not because of problems with his heart. 

      This is our big week! We've got a heart appointment, GI appointment, and swallow study in the hopes of getting some answers to the weight gain issues. We've also got an eye appointment that was booked separately and therapy.      We don't know exactly how to approach this week. We are expecting big news and bad news but at the same time hoping for good news and maybe answers. I've also been hoping that he'll just start gaining weight this week and we'll be well on our way! He's eaten really well today. Realistically, there will probably be more, "We just have to wait and see!" somewhere in there. Actually, realistically, no one knows the future, right? It's hard to guard your heart from going straight to worst case scenario. But we also feel like we have good reason to worry about these things. Ultimately, God is in control, but emotionally it's hard to go through this week. I feel like I say this a lot, but I don't know if all of...

      When it's more waiting, the update is much more about how we are doing day-to-day then what has changed with Leo. Unfortunately, things haven't really changed. He didn't gain weight at his weigh in yesterday. I wasn't really expecting much, but for sure hoping for it. Friends, hoping is tiring. Those are the days that I tell God to just tell me what Leo's future will look like so that I can prepare for it. But reality is that we have hope even if we don't feel like hoping. In the tired moments, we lean on the Lord who tells us that this world--all of its hurt and sickness and injury and what not--is not our home. We're just here for now. We'll move on into eternity, and I'm glad that I know we'll be ok for eternity, even if things on this earth get hard.      The one new thing that we are more aware of is the Leo might need a feeding tube. The doctor yesterday mentioned it to me as a possibility. She was not saying it for certain but she ju...

     When this journey started, we began referring to Leo as our little fighter. After the MRI results, we really saw that Leo was most likely going to have a lot of challenges and potentially some pretty significant ones. One way that we looked at it then was that we'd have a lot to celebrate with Leo because every tiny step would be a big deal for him. Every step is an accomplishment that we have by no means been guaranteed. So here's to not forgetting that perspective.     Leo can cry, yell, laugh, smile, respond, etc. in such a way that he did not when he was born. I asked many times for prayer surrounding his voice. And what a beautiful voice it is! Also the social awareness that he has which we did not see in the beginning, probably due in good part to the seizure medication.  God gave us a good thing. Leo is pulling his knees up to his stomach and his hands to his face/mouth which used to be nearly impossible for him. His muscles are learning! He tur...

      Small update, and one with some "how are we doing?" in it (in my mind there's a difference between a "medical" update and an "emotions and state of mind" update).     Leo had a weight check today and he didn't gain in the past two weeks . And he's having big spit ups and a lot of them We are going to get some blood work done, an upcoming GI appointment, upping the calorie concentration in the formula, and starting some medicine for reflux. Many things like spit up consistency, poop frequency and consistency, and Leo's mood are still really good. So those don't seem to point to big issues. But we are hoping to get answers and it's stressful to not know.      The prayer request would be for Leo to gain weight, for us to get these spit ups under control, and for us to get answers as to why this is so difficult for him right now. Weight gain is something that many babies struggle with. It doesn't have to be serious. But, we wa...

    Ahh. That question. "How's Leo doing?" Don't get me wrong, I want this question. I mean that. It's so prevalent in my life that I really want to tell you how Leo is doing and how it affects my life. But it's hard to answer. There's a lot of big things going on that are hard to summarize, so just be ready for an answer if you ask it because I'm going to give it! As we get further away from the trauma of Leo's birth and the month after, the answer to this question becomes less and less......shocking? Newsworthy? New? Yeah, new. Looking back there was a lot of shock and a ton of unknown and some huge questions. As we move forward in time, we're further from that initial shock. We are in the process of healing and recovering. We are learning every day about Leo and what he can do. And there are still big questions about the future. When you think about it, though, there's big questions for every single person. None of us know what's rea...