Family Reflection

     As time goes on, these updates will change--and they have changed. We started out posting a couple of times a day. Big updates and new information was coming rapidly. When we came home from the hospital the first time, there were so many appointments and transitions happening. These days there's therapy and the occasional appointment or big appointment. I know that we are not past all of the craziness. We'll never be passed all of it. What I'm saying is that when there is a lot of new things happening there's a lot of information to give in these updates. However, when not as much new data is being collected, these updates are more how we're doing (emotionally and mentally) than information-giving.

    I'll start with Leo and then it'll fan out from there. He is getting over RSV. Praise God for a strong immune system. Handling phlegm and coughing proved to be a bit difficult for him with his muscle tone, but he is a strong kid. His nights have been miserable for him, coughing waking and keeping him up. The cough has gotten significantly better in the past couple of days. However, please pray for Leo to get back to some really good nights of sleep. Ever since the nighttime feeds started, he's not been able to get solid nights rest and we really want that for him. 

    He's gained weight! Before getting sick he had gained weight. We check in with the doctor once when sick and he hadn't lost much at all. I'm fairly confident that he'll gain back from being sick. But we are hopeful that he's got some growth spurts in the near future. Our physical therapist actually had to adjust the feet on his stander the other day too because his legs are longer! HUGE praise! Puking is still almost nonexistent. When he has phlegm to deal with there are more spit ups but still not what it was. We are also going back to see our GI doctor this week. It's our second appointment with our new one and it's been a little over a month since we saw her last. Prayer over that appointment would be appreciated. With it being so long since we've seen her, I'm a little nervous that she won't be happy with where we're at and we'll have to change a lot. I just get nervous when we go see someone who could tell me I need to change what I'm doing with him in the bulk of my day. I know God's got it. And Leo's doing awesome. Surrender is just hard.

    He's freaking killing it at therapies. I forget if I've mentioned on here or not but when we began using his spio vest in his stroller it was a breakthrough! He is learning to enjoy the stroller and he mostly enjoys the stander. We focus on the equipment mostly in physical therapy right now. His eyes look like they are focusing more. He watches tv some and I love that it catches his eye and keeps his attention. The fact that he can see it and be interested. YES. We are working on some....targeted reaching in OT, like touching a specific color or something. Our speech therapist that we see for feeding support says that she's surprised by how much control he has over the food in his mouth with the way we see that it's hard for him to control his body. And in our communication speech therapy we're working on expressing preferences and associating different objects with things so that Leo can know what's coming or choose something based on objects that we show him. 

    If you could just bathe our therapies in prayer that would be amazing. Leo and I don't work on everything everyday. The ones that I struggle to stay consistent in the most is eating puree with a spoon and tummy time. I don't want to fill him up with puree and make him puke and I don't want to work him up on his stomach and make him puke. It's also hard to help him when he's on his stomach. He arches and really struggles to hold his head up straight. The other thing with therapies is just keeping them in the right place in our life. They are a big part of our lives, but they are not life. And when something like a sickness comes along and takes us out for a week and a half....we didn't do any therapy. My mind was going a little crazy. I get scared that I'm seeing changes in his body--like his feet turning in more or his eyes not moving together--that mean that he's regressing and that if I had just done more therapy with him I could've stopped it. There are just times when the mental part of having a kid in multiple therapies is harder than others. Overall, I know that we're growing in this area, but it's hard. 

    Right after Leo was born (well for a while after too) Brad and I (and family) had a lot to grieve as far as what we had hoped for Leo. We got angry at God a lot. Leo was "supposed to" walk and talk and etc. etc. All the things we dream of, right? I'm not saying that I don't still wish for the small simple tasks like holding a toy or eating or holding his head up to be easier for him. But we can't imagine Leo any other way. We can't wait to talk to him fully restored in heaven. But we love him just as he is on this side of heaven. And, man, the things that he works through and the new ways he teaches us to communicate......what a gift. 

    So we're not at the angry stage anymore (not to say it won't come back). But small things hit you every now and then. Sometimes a book talks about walking or first words, or you don't know how to tell your mom friends that while their kid is working on chewing and eating solo my kid pulled out his g tube in the middle of the night and I kept my cool and put it back in like a pro. It's hard to fit some things into "normal" conversations. I don't say any of that in anger. And God has given us wonderful community around us who embrace Leo as he is and who learn about what our life looks like on a day to day basis. They give us space to talk about the weird stuff. Being a parent of a kid with special needs is a weird and wonderful thing. I'm just trying to describe a little bit of where we're at as far as processing and grief. 

    Thanks for stickin with us