Leo, Our Little Lion Man

      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), put it in his eye sight

  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 his muscles could get. So, we are v

      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 discouraging to hear, but good

 Hello All,  this is Phoebe checking in again for a update like old times (was that really just several weeks ago?). Brad and Charis had an appointment to set Leo up in the Early Intervention Program. Early Intervention coordinates therapies like speech, physical, and occupational. They assessed Leo in 5 domains (Cognitive, Communicative, Adaptive, Social-Emotional, and Physical) and helped Brad and Charis set a few (more) short term goals for him. Based on Charis's initial impression, it was a bit of a reality check for her but a little bit of encouraging clarity for Brad. The good news is that Leo is right where a 2 month old should be on the developmental chart for his Adaptive abilities. He is bottle feeding and nursing like a champ and he sleep well and for appropriate intervals.  The other areas showed a few concerns. The actual damage caused by the hypoxia and the usual delay that kiddos who are born early and need a NICU stay with heavy medication are the main contributing

      The big hope going into the appointment today was that Leo had gained enough weight to show that he could nurse and not use too much energy. He is also transitioning from fortified breast milk in the bottle to breast milk straight from me.      Well.....he gained 15.5oz in 14 days (doctor wants to see approximately an oz a day)!!!!! The lactation consultant was very pleased. She made the comment, "What you're doing is working." She has said part of her job is being my cheerleader, as well as helping me figure out how to transition to nursing in a sustainable way (nursing, pumping, and bottle feeding is not possible for months on end). So, from the appointment I got this.     I will be nursing him 6 times a day and bottle feeding twice. I will be pumping four times a day. We are continuing to stretch him out at night, feeding him as he wakes up. The important factors in all of this are: Leo gaining weight, keeping my milk supply up, Leo sucking well, and creating pos

      We were initially referred to speech therapy for feeding support. When Leo was in the NICU with an ng tube and starting to work towards feeding on his own orally, a speech pathologist was the one who came to his bedside and worked with him (and us) doing paci-dips. Now look where we are! Since leaving the hospital, our pediatrician has been monitoring his feeds and weight gain. Seeing as Leo is taking all of his food orally and is working on breastfeeding, I had asked our pediatrician if we still needed this appointment. He said it would be good to go be seen by them, and mentioned the added benefit of asking about his cry (or lack thereof). So, there's the background for our appointment.      I explained as briefly as I could Leo's history, where he was at with feeding, and his journey to get there. She asked questions to get the correct details. And I mentioned that he doesn't cry. Her response was, "Well, that's a new one for me!" And my response (in

      This week we don't have any appointments until Friday, so it's a bit of a quieter week. Still a little bit to update you on, though.     Leo and I are doing well with nursing. I am nursing him every other time that I feed him. I think it's a bit of a difficult transition for him as far as sucking and only getting formula sometimes (in the bottle he gets fortified breastmilk). We've had some days with more spit ups, less sleeping, or difficulty latching, but we're doing it! The lactation consultant said that she wanted me to just go to 100% breastfeeding, but she's wary to do that because of his weight. So, again, please pray for his weight gain. I'm expecting him to not gain as much--or at least have somewhat of a dip--if he's transitioning off of fortified breastmilk to solely breastmilk, but I think we can still do it.      He's sleeping well at night, giving us some longer stretches. We are getting used to a bit of a routine during the night