Leo, Our Little Lion Man

      A bit delayed, but an update on our eye doctor visit.     Leo and I went to the eye doctor on Tuesday. It was nice to see a specialist after having so many questions about his eyes. This visit offered some encouragement, some discouragement, and more waiting.     After giving a brief description of Leo's history, the eye doctor started by checking to see if the pupils responded to light. They do. They may be a little slow on responding, but they respond. He then used a tool to check for vision. Basically, it was a cylinder with black and white stripes on it (1 inch thick). When he spins it in front of you, it forces your eyes to move in order to follow the movement. He did it on me and himself to show me. When he put it in front of Leo and turned it, Leo's eyes moved. So we know that there is some extent of vision there. Praising God.      After that, Leo was given drops to dilate his pupils. We had to wait a bit for them to work. ...

      Quick update.     We scheduled speech therapy for Leo after he went back on the bottle. It seems that his suck is a little weak and he's a bit reflux-y so we just wanted to make sure that he was swallowing, getting what he needed, and there weren't any muscle issues that we weren't aware of.     Went in today and, again, got the news that we do not need to meet with her regularly! Leo did great with the bottle. We are watching the time that it takes his feeds (not going too long), and there are things we can do to help him not get overwhelmed by the flow of the nipple (and then the milk goes down the wrong pipe). It was very comforting to talk to the therapist about our concerns. Brad and I were worried about what these struggles meant for his swallowing ability and the future. Would he be able to eat solid foods? Is he going to need a feeding tube? Your mind just goes to worst case scenario sometimes, and it can get away from you. The therapist ...

      Last Thursday, we had a follow up appointment through CHOP at the Harrisburg Pike Health Campus. We didn't know what to expect going in, but it turned out being a pretty encouraging visit. The doctor told us at the beginning of the appointment that she was there to assess his development and make sure we were connected to the right and necessary resources. She ended up encouraging both of us, as well.      It was so nice for someone with her expertise to get their hands on him  and assess where he's at. This was similar to what Early Intervention would do for an evaluation; however, early intervention did a video evaluation with us due to covid procedures. She had also seen Leo and evaluated him while he was in the Women's and Babies' nicu on the cooling mat. It felt comforting to know that she knew Leo's beginning very well.      So how's he doing developmentally? I will answer this to the best of my understanding, but please unde...

      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 ca...

      Leo is four months old tomorrow! Honestly, it feels like a lot longer. And, yet, I can also feel the days of him being this little slipping away. Funny how things can feel. Anyway, we haven't done an update in a while.     Until yesterday, Leo hadn't had any appointments in a good two weeks (probably three). Yesterday, we had another lactation consult and on Friday he has physical therapy and a visit to the pediatrician. He's honestly been doing well. We are grateful for where he is at, but the future still feels looming sometimes.     Our lactation appointment did not go as expected yesterday. Leo did not gain much weight since we went to fully nursing on May 18th. The consultant also observed that his latch seems to be loose and his suck weak. It seems that Leo can't keep my milk supply up on his own. Before, when we were transitioning to breastfeeding, I was still pumping which kept my milk supply up. So, it looks like he hasn't been getting e...

    We're back home! Haven't had an appointment in weeks, and still going strong!     Being at Wayumi and the cabin with a little one was very enlightening. I knew in my brain what to expect, but you also just have to experience it for yourself to fully process the limited freedom, new priorities, and self-sacrificing necessities. I don't mean to sound dramatic, though. It was a good time.     Leo did so good! Wayumi was definitely over-stimulating for him at times. I tended to remove myself from the group in the afternoons and get some quiet time with Leo in our room to do some therapy and nap. He didn't always sleep the greatest during the day, but at night he was a champ! He met lots of new friends, too. That presented another new experience of telling new people about Leo's story. Basically, I just wanted to tell anyone who held him about his high muscle tone because you don't expect a baby to be that strong. People were very encouraging and loving to L...

    Since we don't have as many appointments, it's hard to organize my thoughts to update you all. But there are plenty of things to share! Let's start with his "appointment" first.      Leo had another great therapy session! She was so pleased to see so much progress from one week to the next. He is doing really well with lifting his head up. He's pushing it higher than before, holding it up longer, and able to control it a little more (and moving it to both sides). Something that we are working towards is for him to be able to hold his head in the middle (looking straight up) when he is on his back. As far as his limbs, he is still extending and contracting them. It's a bit challenging for him to bring his hands to his knees but we are seeing it some. He is kicking his feet, but needs to work on abdominal strength. So, I have exercises to practice with him and ways to lay him down so that certain things are supported to help him work on specific muscles....