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. The doctor then used tools to look into h

      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 told me that Leo's

      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 understand that will be somew

      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 he

      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 enough to eat.