Different

We always say life looks different than how we'd imagined it. And different isn't bad, but it can be hard. We are learning to grieve the things we hoped for, celebrate them in those around us, and accept our normal. It's not a bad normal. It's just different.

These are some things that are "normal" for us that I don't think are normal for many around us. I'm grateful for a space like this blog to be able to share about some day-to-day things.

Compass Care appointment

There was a butt in every one of those chairs. Doctors, nurses, residents, a social worker etc. Compass Care works with kids and families who are complex cases. "Complex" is defined as having 3 or more specialists. They talked through each area of Leo’s care to see if we were lacking anything. They help advocate for us, schedule things, reach out to people, and point us to resources. They look at big picture and not only for Leo but also for us as a family. I don’t know if I’m explaining it well. But there are like 4 appointments that have been on my back burner to try and schedule—things like eye check up and hearing test, not urgent things. So they will schedule these for me. They are also looking to get us into the bone health clinic at chop. And as they schedule these things they work as best they can to get multiple appointments in one day for us because they know we come in on the train. It’s amazing support. An extra blessing is that with Brad’s recent job change, he was able to come to this appointment with us! 

Some Christmas shopping at the mall. The smooth riding, bussling, and lights were good distractions for Leo, too. It was really encouraging to have good time in the stroller!

When Brad and I first discussed the name "Lionel" it was brought up that people might think we named Leo after Lionel Messi. I always said that I wouldn't care if people made that association, but truth is we didn't name him after Messi. Brad says that in his mind Leo is 10% named after Messi. Well, let me just say that after this world cup I was almost claiming that we did. Looking at this picture, it struck me that it was hard to get a picture of our backs. It's one of those differences. They can catch me off guard. Sometimes those differences make you sad. Sometimes they make you happy. Sometimes they make you jealous. Sometimes they arouse loneliness. It's not a once and done thing. It's life, moving, ebbing, experiencing.

Leo sleeps from approximately 10pm-6am. He still has a nighttime feed because he needs those calories to gain weight and if we fed them to him during the day, he would most likely puke them up. We are working towards 3 meals a day sustaining the nutrition he needs to gain weight. This means that we are trying to help him handle/tolerate more food and not puke it up. And that means slowly upping the amount of food Leo gets. However, the amount of food he gets at night needs to be kept as small as possible because he sleeps so much better when his body isn't trying to digest all this food. I say all of that because it affects his nights and his mornings. We don't hold Leo to a strict bed time because depending on how feeding is going so much affects when we put him down. Sleeping through the night has always been a value, though. I want that for him. He doesn't nap a ton during the day, but he's visibly happier when he gets good sleep at night. 

Typically, 6am is sleeping in for Leo. If he's having a pukey morning for whatever reason then I will hold him while he finishes his nighttime feed and for a bit after. If that goes well then I try and do some things like exercise and devotions before Leo needs meds at 7:45 and his first meal started at 8:30. I'm not the greatest with routines, but Leo and I are working on having mornings be as consistent as they can. The ability to adapt around a routine has also been a blessing with Leo. 

Also, our nighttime nurse comes at 10pm and leaves at 6am. It is such a relief to lay down and know that if something wakes Leo up or if he has a cough, I don't have to be the one to go to him. Our nurse allows me to check out and get much better sleep. And, dare I say, I'm a little like Leo in that area, visibly happier when I get good sleep. Also! We have had one night with our new nurse. So we are still keeping our normal nighttime nurse. But another lady was looking to pick up every other Sunday night. Our insurance approved that so we were open. We have done one night with her and it went really well. It's nice to have another person getting to know Leo and what his nights are like. 

(Not sure if this video is going to work but here we go)

Things I notice about this video:

His head is straight and mostly up. 

He's looking at the screen. 

He's not arching. 

He's bringing his hands toward his mouth.

He's ok (and not screaming).

This is a little snippet of what working on therapy looks like. 

There's my blurbs and thoughts from this month. Sometimes life is crazy overwhelming and I feel like I can't even pretend to do it by myself. Truth is none of us can. 

Wishing you a happy winter and a merry Christmas!