Adapting

    There's so much I don't know where to start. I've literally typed out multiple paragraphs and deleted and rethought the words. I don't know why.

    Ok. House. I've said this before, but when you get so much from people it's sometimes hard to say the words "thank you" because they feel so inadequate. Nevertheless, gratitude should never stay silent. When it comes to the house there's such a feeling of undeserving and a fear of obligation. What if I don't say the right things? What if I don't sound grateful enough? How do I accept this help without being stuck up about it? I don't know. I say all of that to try and communicate that we are grateful, a bit in awe, humbled by accepting what God has for us and also seeing that God is working in others as well, and just feeling totally spoiled in this pretty cool house of ours. 

    As it relates to Leo, it's pretty great that he has his own room. Other than the creaky floor I think our nurse likes it as well. It's awesome to have space for his new equipment. By the way! We got the stander! So the guys from our church made an amazing living room closet for us that fits Leo's equipment. I can put it all away in there and have it out of the way. A real bed is in the works for Leo. And our therapists and nurse are grateful for our driveway. What a sweet extra blessing to have a driveway in the city. 

    With the help that we got on moving day, we had pretty much all but two rooms unpacked. We have a spare 'oom (who knows the reference?) with boxes upstairs and our dining room is a bit of a catch all. But we feel really comfortable. Brad said that it feels kind of like an Airbnb, but it's starting to feel like ours more. I have cooked a couple of times and that always helps. Also, what a blessing a dishwasher is. Another praise is the help we got with food while moving, and the leftovers and meals people have left for us. And there are people I can reach out to and ask for meals. The Lord provides.

    Therapies are in full swing. He sees two speech therapists, vision, occupational, and physical therapy. We just started physical therapy twice a week. That's so helpful. She can work with him two times a week on the stander and the chair. It takes some of the pressure off of me. Therapies are a lot right now. Things that I try and do with him daily related to therapy are: spoon feeding puree (twice), stander, adaptive stroller, boots, vest, side play, reaching, grasping, engaging visually, verbal responses, and eye patch. There's just a lot to try and do. Balancing working hard and grace and reality is hard. Prayer that God would just give wisdom and strength to me during the day is appreciated. 

    We are going to Philly tomorrow. Haven't been since beginning of June (praise God!). We are seeing the CP clinic again. I would ask for your prayers in regards to Leo's bones and muscles as he grows. Priase God, we feel like we are making some headway in growth. But it is going to be hard to see how his body may develop. Brad and I both fear for his mobility being taken away by his own body. We obviously want him to be as mobile as possible. But a friend helped me with this, "No matter what they tell you at an appointment, it doesn't change who Leo is." And we are working on not carrying the weight of having to fix things for Leo but simply being faithful to what God has called us to. It's hard to let go of the outcomes when we are making so many decisions about his care right now. So prayers surrounding all of that. I am looking forward to a Philly trip with my mom and Leo.

    According to our calculations, Leo is gaining weight! It is slow, but we are hoping to see a bit of a growth spurt. He started new movement medicine and that's been going well. He has had a couple of spit ups in his bed in the morning but totally manageable. Something that struck me was that our pcp didn't mention Leo's weight at his last appointment until I asked her. Like she wouldn't have even have brought it up. And that's amazing! She didn't stress his lack of weight gain (he was up 3 oz). She asked all of her questions surrounding how we are handling it--eating, puking, movement stuff. It is important to her that he gain weight. We are addressing specific things. She addressed those things and didn't stir up panic about the weight gain. I love her approach. We have had a doctor in the past who definitely expressed some panic about it and those appointments were difficult.

    Lastly, prayers for nighttime nursing are appreciated. Things continue to go well with our nurse, but it's just not a simple thing having someone work in your home. Prayers for guidance if we want to talk to her about taking less shifts with Leo and finding someone else to split the week with so that the hard nights aren't as much for her. And prayers for not taking on worries that we don't need to. I don't want to make this sound like a bad situation. Our nurse has cared for Leo well and we are happy with her. He's had some bad nights that were hard for her which makes total sense. In our human hearts it is easy to bring up the worry of her leaving and it's just something to surrender to God daily. I don't know if that makes sense. It's not a constant stressors, but a sensitive one. Like it's easy for it to be brought up in our hearts--doesn't take much. 

As always, here's some Leo cuteness along with a picture from the day we moved :)