Home Day #142

     It's been a while! But there's some scattered things to give updates on! I keep thinking about how this blog started. When Leo was born, we were on a day-to-day updating basis. After the MRI results were given to us at CHOP, we were updating this every couple of days. Once we came home it was kind of every couple days or every appointment. Now, here we are. We are home and getting into a groove. It may sound strange, but that's it's own thing to process. But here's what's up with the little lion man.

    So, I just wanted to take a moment to tell you about Leo's personality instead of only his....conditions (not quite sure the right word to use). Let me just tell you that this little boy is such a talker! What a beautiful voice. Shocker, right? The child of Brad and Charis Wilcox is a talker. He is so responsive to voices and music. And we definitely have those times where he's not angry or sad or whatever--he's just talking because he wants to interact and hear his voice. He is very much a snuggle bug. And he's tactile. He responds to rubbing his back, rubbing his head, kisses, gently rubbing his leg, patting his chest. His favorite place to sleep is on Mommy or Daddy's lap. He doesn't like to be alone. He does NOT like to be strapped down and lets us know. When we put him in a car seat or stroller he gets this looks that's like, "Why are you doing this to me again?!" He's generally a pretty happy boy if he's fed and rested. He gets tired of therapy sometimes and trying to get his muscles to move a certain way. And he can get some big emotions (he also got a double dose of that). 

    Appointments-wise we've been pretty scattered this month. We are seeing our pediatrician soon for the second time to discuss Leo's diet and weight. I don't think I need to go into details there, but prayer for wisdom is always appreciated. As far as eating goes, he has shown us that he can suck (although still a little weak) and swallow, but please pray for the muscles in his mouth (and whatever others he needs) as we get closer and closer to moving beyond only breastmilk. We don't know, again, what he'll be able to do and not do. That's an area of worry for this mama's heart. We have officially started occupational therapy (OT)! Right now, she is helping Leo with sucking as well as sitting up right and reaching or grabbing toys. There's a bit of overlap with PT, but it's great to get their perspectives on how he's doing. We had a virtual check up with Leo's neurologist at CHOP and she said that PT and OT are for sure the therapies he needs to be in right now. She said that the priority for him is to gain head control, strengthen his core, and roll over the right way (using core muscles). 

    As far as his muscles go, he is getting better at controlling that head of his. He is improving in tummy time as well and even reaching for some toys. We are getting that "vest" for him within the next two weeks I think. We are working with Leo as best we can to help him balance out his muscle tone, but trying to keep prayer at the forefront. Ultimately, we can't wear the pressure of making Leo better. Leo is in the Lord's hands, but understanding that along with how to help him is hard. 

    A kind of new thing that has come up is car seat and stroller issues. Basically, Leo's really uncomfortable in them. I don't think it's unusual for a baby to dislike those. But, Leo's muscles don't help him. When he gets excited or frustrated, he extends. He arches his back, pushes his head back, pushes with his legs, and his arms go out. He doesn't do the "seated" position very well. We would appreciate prayers that I--along with the therapists--would be able to work with Leo to help him become more comfortable in the car seat. I am trying to take time during the day in the house to sit him in it and get him to not squirm and scream. We are also using a new stroller and will have to figure out how to situate him in it as well. Aside from helping him be more comfortable, could you also pray for our parent hearts? Something that caught us off-guard was getting out the new stroller. It's something that we expected to be simple, right, putting a baby in a stroller. But, with Leo, it's not simple. And it's a reminder of his injuries and that we wanted something different for him. 

    Kind of adding to that, I'd like to just ask for prayer for Brad and me, too. As Leo grows, there's just a lot of ways that we are reminded of what we wanted for him and what we got instead. There's still a lot of questions about what he will and will not be able to do. I hate that. But the verse that God has brought me to this week is, "You keep him in perfect peace whose mind is stayed on you, because he trusts in you." (Isaiah 26:3) When our minds are focused on the Lord, we are reminded of these truths. 

    Earth is temporary. Pain and our bodies down here are temporary. We will be with God for eternity and that's a lot longer than life on earth (but it sure feels long down here). God's plan is better than ours. Just because this is not what we wanted doesn't mean that God is not here. God is still in control and he has a purpose. His name can be made great. Also, the soul is more important than the body. Leo might have a lot of reasons to be angry at God, but may he cause people to question why they think certain things are a necessary part of life. We must be faithful and we are not guaranteed tomorrow. When all of the questions and possibilities with Leo's future arise, I am reminded that none of us are guaranteed tomorrow or even tonight. We must take today and serve the Lord. 

    And, the best truth of all, Jesus Christ died for our sins and when we die we will be with God forever. Because of that, we can have peace and joy and hope no matter what is thrown at us and Leo. Because we have hope outside of our external circumstances. 

    Blessings to you all, and thank you for your love and support.