Muscles, Eyes, and Emotions

     This update may be a little general and vague. These appointments came at the end of an emotional week without Brad. My brain was a little foggy, and Leo's goals are getting less and less measurable in the week-to-week. 

    Friday started with our physical therapy session. Sidenote: it's amazing the early intervention sends someone out to our house and we don't pay for it. We are very grateful for her work with Leo. She hadn't seen him in about two weeks before this. So, he continues to improve in regards to his muscles and hasn't really improved in his vision. 

    As far as his muscles, he's a bit more controlled when he holds his head up on tummy time.  It used to be necessary to roll a blanket up to stick under his arms for support as well as put my hand on his waist to keep him from rolling over (with his high tone and reflux he would move around and push himself off of his stomach). She gave me some suggestions that can help him with turning his head and strengthening his core. One of the next steps we are working on is to strengthen the core muscles that he would use to roll over (from back to stomach). Another suggestion she gave was to continue to use auditory methods of getting his attention. We can see him respond to sounds. We can use that to help persuade him to turn his head. It's also going to be helpful for me to just continue to observe how he responds to sounds in order to learn more about him. 

    His eyes seems to be progressing pretty slow. Several people have told me that they see his eyes bouncing around less. It's hard for me to tell because I am with him everyday. I do still work on helping him focus his eyes and track. When he does track it isn't very much. The pediatrician said that with Leo's prematurity, this could be a developmental thing. It's also something that he's seen kids without brain damage have to deal with. His eyes don't seem fully controlled yet (they sometimes go in different directions). So, it seems like there's a lot of possibilities as far as why his eyes are doing whatever it is that they're doing. Prematurity in developing? From the brain damage? We're not sure and he did give us a referral to an eye doctor so that we can get an opinion from a specialist. We will be starting down that path soon. 

    His pediatrician visit didn't give much new information. He did gain weight well since the lactation consultation. That was really encouraging. The boy is getting nutrition! I mentioned before what the doctor said about Leo's eyes. He was impressed with his cry. Leo also continues to get longer. I don't know where a tall child came from! We will be going back to check weight at the beginning of August. 

    The purpose of this blog is to update on how Leo is doing, but every now and then I like to add a little section about how Brad and I are doing with all of this.

    I had a bit of a rough week last week. It was good in many ways and rough in some. Grief can come in waves. Last week the wave roared over me, in terms of fear for the future and sadness for the reality of the struggles of brain damage. There's a lot to process in terms of grieving what we had hoped for Leo. Brad had a youth trip last week. That's why I say I had a rough week. His was really good (although he did miss us). But amidst a job transition, Brad processing things with Leo has looked different. He is switching jobs at the end of this month. So, a lot of his energy has been required on that front while my days revolve around Leo. We each process and emote differently. It's been sweet to do it together and also necessary to do it individually. 

    We are so grateful for all of the progress Leo has made. God has been very good to us. And, no matter what Leo can or can't do, he is such a gift. We are excited to learn from him. But sometimes the reality of even needing therapy or seeing that he moves differently than other babies can just make you sad. It hits out of nowhere. We are very blessed. But it is also hard. 

    God gave me a prayer this week. I pray for Leo to wake up with flowing, fluid movements and to look right at me. That's my dream. And God can do it. But we will praise him no matter what. We live in a fallen world. This world is not perfect and pain reminds me that someday we will be in a perfect place. We will be redeemed and with our creator forever. Let's stay faithful, friends. And if you don't know Jesus (I'm talking, like have a relationship with him the way you do with another human on this earth), I'd love to share more if you'd want to know. He is my friend. And I'm nothing without him. 

Philippians 1:21 "For me to live is Christ, to die is gain."