CHOP NICU Day #12

     We met with physical therapy today (March 24th). Well, she came to Leo's bedside to evaluate him and work on some things. She looked at Leo's muscle control in his limbs, neck, and face. She looked at how he picked his head up, tummy time things, and eye control. She had some observations about him and suggestions for him. 

    His neck muscles are rather weak. We will be working on helping him lift his head from certain positions. There are ways that Brad and I can encourage him to use those muscles. He also doesn't seem to engage well with his eyes. Like, I wouldn't say that he looks at me, more past me. The therapist suggested swaddling him up before practicing "engaging" with him. She said that it's not normal for a baby his age to not look at you. That was a hard thing to swallow. She also confirmed that Leo is a bit "floppy." He is hypotonic. The neurologist has told us he will most likely by hypertonic but that starts as hypotonic. She seemed to confirm some visible brain damage and we just don't know what it will look like. But she also left it kind of open because she said there are still a lot of factors that are affecting Leo and how his brain is functioning right now. 

    . Leo is a premiee, born a month early. So when they look at him at 4 months they will be looking at 3 month milestones because of his development. He also still has phenobarbital getting out of his system. It takes weeks for it to get out of your system and he's only been alive for two, without it for one. As we see evidence of the brain damage, we don't know how severe it could be. He could be hypertonic, but as we work with him and do therapy we find out that it's not completely debilitating. So the extent of the brain damage has yet to be seen as well as the effects of therapy. He also has an incredible brain that is working to rewire the pathways that have been damaged. The last factor the physical therapist mentioned was that Leo is recovering from a lot. He's fought every day of his little life so far. And he's currently learning to breathe on his own which requires a lot of effort. 

    So the meeting with the therapist was a bit of a reality check for Brad and I. She confirmed that Leo isn't a "normal" baby. We knew that but are processing certain things a step at a time. We still do desire for Leo to be healed from the damage. But more than that, we desire for Leo to be able to do things and engage on his own. It's difficult to hear that he's not engaging with his eyes right now. But the therapist also left us with so many factors that we really don't know what life with Leo will look like. It truly is a lot of uncertainty and waiting. 

    We love Leo. So much. And however the brain damage affects him, nothing changes his value. God will give us what we need to take care of him. Right now we just want him home so bad. But processing the reality of him having brain damage and preparing ourselves for this long journey of raising Leo, watching what he can do, working on things with him, and helping him in every step are where Brad and I are at right now. And we may be there for weeks, months, or years. 

    We truly are not guaranteed tomorrow or anything about it. May God's will be done and may He be known better. Please pray for continued healing in Leo's body. We desire that it would be "complete" healing, but God knows and Leo is wonderfully made. Pray for Leo to continue to recover from his traumatic life so far. Pray that Leo can eat and breathe and come home! And pray for Brad and I to continue to process all of this and be ready and able for what the Lord has for us. 

    And, please, praise God for Leo's life. He is such a gift to us.