Leo, Our Little Lion Man

    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....

      I actually don't know when our next appointment is. I know that it's Lactation because we are going to do a one-month-breastfeeding sort of check up on Leo. But other than that, we are on therapy sessions, 3 month neurology check-ups and monitoring, and normal pediatrician check-ups.      We had another therapy session and it went well. Leo was a little fussy, but still did a lot. He seems to be getting stronger in the neck. He can lift his head up better and is definitely supporting himself more and more. That's our tummy time workouts showing themselves valuable! We're still working on eyes, and I feel like that's going to be a long road. We are just working on focusing and tracking. And, to be honest, it's hard to not get discouraged when working on that with him because it's difficult for him. Every now and then (doing therapy or not) it'll just make me sad that I'm trying to get my kid to look at me. But, oh, it is sweet when he does and I...

      In some ways today was dreaded in my mind. I thought that once we did physical therapy I would feel overwhelmed by all the things I'd be encouraged to do to help Leo develop his muscle tone. I also thought it would be confirmed and I'd simply get insight into how to help Leo feel comfortable as his muscles got tighter and tighter and his mobility left him.     Well, today did not leave me feeling that way. Brad and I were very encouraged with how Leo is doing, hopeful for his future, and better equipped to help him. The therapist gave us great activities to do with Leo, explained hypertonia and muscle tone in the most understandable way that we've heard, and also had great things to say about where he is at.      The biggest things we are working on with Leo are his eye tracking and bringing his motions to the midline. To help his eyes, she told us to use something with very contrasting colors (she suggested black and white or primary colors...

  God answers prayers! Also, the tshirts from the fundraiser are arriving, so just wanted to say again that we'd LOVE to see pictures of you in your "Fighting like a lion" tshirts! If you want to find me on facebook, instagram, or text me I'd love to see!

      Driving back to Philly today was very strange. Our month there feels like a world away. Those familiar sights reminded us of certain songs, conversations, and people. Lots of feels. Can't describe them all.     But the appointment! Leo did so good. He was a bit fussy, but it gave the doctor a chance to see his full range of motion and hear that beautiful cry. She was pleased with where he's at as far as feeding and sleeping. Most of the appointment we talked about his muscle tone.      She did confirm for us that he is hypotonic around his spine and hypertonic in his limbs. She observed him laying down--on his back and on his stomach--and also tested some reflexes. She gave us instructions on tummy time and how to help him strengthen the muscles in his back and neck. The physical therapy (set up by early intervention) will add to that with ways that we can stretch his limbs. He will be monitored as far as spasticity, or seeing how tight...

      Leo gained almost 13oz in 8 days!!!!! Wait for it.......mostly nursing. So, folks, we are off of the fortified breastmilk and on to, Leo is fully nursing. I may still give him a bottle or two if he will continue to take them, but it will be straight breastmilk. The lactation consultant advised me to continue pumping several times a day so that Leo doesn't have to work as hard to keep my milk supply up. Who would have thought after Leo's birth that a little over two months out from that he'd be able to nurse. PRAISE GOD! Thank you for praying!     Also, I think I've mentioned this already, but our little guy is crying. He got shots today and has been showing us his cry since then. He is getting stronger. Our little fighter. And, people, GOD HAS ANSWERED PRAYERS!      So, might I ask for more. The doctor looked at Leo's muscle tone and did mention that he seemed a little bit tighter since his last visit (about a month ago). That is discouragin...