Therapy and Weight Update

  Ok. I have been meaning to write this update since last Friday. So I'm going to start there.

    Leo had really great therapy sessions last Friday! I was particularly happy that he was in a really good mood for PT (mom-win!). She worked with him on his stomach and in sitting up. He is doing well on his stomach. He needs some assistance with keeping his core straight, but in holding his head up and turning it and even reaching he's doing really well. He's also been working really hard at holding his head up while sitting up. We have found the sitting up and leaning forward really helps him relax. Because his default is to arch, he's a very stiff baby (if you've ever held him, you know exactly what I'm talking about). It seems that even if he wants to pull his legs in, his body doesn't know how to do that so in trying to use his muscles he arches and his legs get stiff. I don't know how well I'm explaining that. But my point is, he needs help learning how to relax his muscles. Our therapist gave a lot of good feedback as well as homework for him in this sitting up position. 

    He did well in OT too. He seems to be getting better and better at taking the bottle (not as much leaking out of his mouth and taking more in less time). He's also bringing his hands up to the bottle or his face or his head a lot more! He definitely lacks coordination, but him bringing his hands to the middle of his body and up is a really big step.

    So, yesterday he had a pediatrician appointment. We were going in to check weight--he switched to formula two weeks ago for a number of reasons. Yesterday was hard. Leo gained two ounces in two weeks. Since the beginning of August he has seemed to struggle with weight gain. Now, knowing what is and isn't related to his brain injury and something bigger is difficult. The pediatrician is taking things to the next level so that we can really figure this out. We are being referred to a GI doctor. They will look internally. We are getting some blood work done and looking at his thyroid functions as well. They looked at his heart. And we upped his caloric intake. The pediatrician is thinking that something to do with Leo's muscle tone makes him burn more calories than other babies his age. I'm inclined to think that it's related to that somehow. 

    Please pray that he gains weight. Part of me feels silly writing about a weight gain issue because it could be something very small. But part of the difficulty we are having is the uncertainty. Part of me says it's just a caloric deficit but the other part of me is scared that he's going to end up on a feeding tube again because he can't get the nutrition in him that he needs (the pediatrician said nothing about a feeding tube). It's just hard to know what's just a struggle to gain weight (I mean, Brad is a small dude ;) and if there's something more significant. The pediatrician was very reassuring that we are going to figure this out. I am very thankful for where we go. 

    Today Leo got his spio vest! So we had PT today and Leo got a vest. It is to help him sit up and relax and hold his head up hopefully. It's supposed to provide good sensory input to help him learn to use his core muscles. I'm still a little stressed from yesterday and he was a little fussy this morning, so we're starting slow. But I'm excited for this new thing.

    Here's a dump of prayer requests (some repeated, some new)-

Leo would gain weight and we'd be able to figure out what's going on

Therapy to continue to help him

Eyes, tracking and focusing--he's been tracking a high-contrast book really well, but I also want him to be able to look at me.

Learning how Leo relaxes--this will help us teach him how to move his muscles intentionally. There's a lot to learn when it comes to Leo's muscles and understanding what is intentional movement on his part and what is a reflex and what he's trying to do even if he can't do it. 

Car seat- we continue to struggle with Leo screaming in the car seat. I sit in the back when I can and try and help him relax. We have seen that when I'm back there, things go a lot better. But I can't be back there all the time. I just really want him to be able to fall asleep in it. And, I'm not just talking about a boy who dislikes his car seat. He doesn't like to be strapped in, he fights it. And he pushes so hard we're trying to make sure he doesn't hurt himself. It's just really hard to work with and deal with. 

Muscle tone- please pray that he doesn't loose his mobility.

Seizures- we were told he has a higher risk of developing seizures when he's older and that's a hard fear to surrender some days

Mental health for Brad and me- Brad is doing well at his new job, but it's still a big adjustment. I've been struggling with stress when it comes to taking care of Leo. Therapies and appointments can go well and I'm getting better at keeping track of things. But in therapy we work on helping him move in a certain way. And watching him move in his natural way is hard because there's this voice in me that's like, "He shouldn't be moving like that!" And I feel like I want to make sure that he doesn't arch his back, for example, and that's just an impossible way to live. I can't keep him from doing things. But I can encourage him and help him in moving certain ways. It's just hard to work on things with him and surrender a lot daily. Again, I'm not sure if I'm explaining well, but please just pray for me mentally :)

Spio vest! I'm very grateful for our physical therapist getting this vest for Leo. We have high hopes that it will help him but we don't know how he'll respond. Please pray that it helps even in small ways.

If you're reading this, you're with us for the long haul. Thanks for showing us God's love. And thanks for loving our little lion man.