Moving

     We move in 3 days and I need a packing break!

    First, let's just say that God has orchestrated our house work and it's amazing to be reminded that He is taking care of us in such big ways. More work has been done on our house than we had planned and we haven't spent as much money as we had planned. Thank you to all who helped on our house. Thank you. We are flabbergasted. 

    Leo got his stroller last week! And I found that it was confirmation of God moving us to a house because that thing in our 3 room apartment.......?! It takes up so much space! We are so grateful to be getting more space. As far as the stroller goes, Leo's not the biggest fan. When I distract him with teethers or food he is content. But he is not content on his own in it right now. I am hopeful that PT will help me adjust the straps and supports and that with consistent work we can get more comfortable with it. 

    Leo's weight has continued to kind of maintain through the past month. At our last weight check, the doctor switched Leo's nighttime feeds from formula to the whole foods (blended for g tube). This is higher in calories and he has been tolerating it WAY better. It took a little time to switch his night feeds to it. We had to figure out the rate to feed him at (getting fed for 10-11 hrs straight is really different than one 2hr feed). He puked one time the first night. Since then, we had slowed the rate down and he's doing really well. We used to not be able to count the number of times Leo puked/spit up at night. Well the other morning our nurse told me he had coughed four times......We've come a long way. We are also working on increasing the amount of food Leo eats during the day, but that's a bit of a slow process. I haven't checked his weight since we made these changes. I don't plan to check it again until we are moved in. That's not something I want to stress about right now. So many other things about his eating our going well. We are just still needing some good weight gain. Please pray for weight gain. 

    Nighttime nursing has been such a lifesaver. We continue to feel comfortable with our nurse and are continually encouraged when we get to see how well she knows Leo. It is still a difficult thing to maneuver. Leo's nights are pretty hit or miss. He is having more good nights-actually sleeping through the night more-but it isn't uncommon for him to be up for hours at a time. Every now and then our nurse has made a joke about Leo not sleeping for her and it's really easy for me to freak out about those comments (Brad struggles with them a little bit, but I definitely take them on more). I want to be clear that our nurse does not say these in any mean tone or passive way. She's joking. But I can freak myself out and "She's going to leave. She hates taking care of Leo. She's frustrated. She's going to leave. She's so done. This isn't what she thought it would be...." You get my drift? I share that to illustrate that bringing someone in to your home regularly to care for your kid who can have very frustrating or confusing needs is hard. But we continue to thank God for help, for our nurse, for better nights.

    I am discussing Leo's muscle tone and movements with a neurologist tomorrow. Please pray for wisdom in communication and for some helpful changes. Our new pcp had good insight into Leo's movements. She gave some good questions to discuss with his neurologist. Also, while Leo continues to struggle with the carseat and stroller, I believe that medicine will positively affect him in those areas. I want to look into this more than we have been. Prayer for wisdom, guidance, clarity, and communication for Leo's team would be appreciated.

    Oh, yes, we switched pcp's. We were very sad to leave our pediatrician. He was AMAZING to us! AMAZING. We cannot recommend him and thank him enough! But we got connected with a complex care pediatrician in Hershey and it felt like the right time to switch to a more specialize pediatrician. She has seen many kids like Leo. God gave us such a gift in Dr. Summers, but we saw the time to move on. Dr. Murphy is also a gift. 

    We have more therapies than appointments right now. September will bring it's own set of appointments, but I'm not thinking that far yet. Prayer for strength as we move this weekend and adjust to some change is appreciated. 

    We are continually humbled by the help we receive. Thank you. It feels so pointless to say compared to the support we've received but we won't stop saying it. Something God has been teaching me in all of this: it's not bad to need help. It's uncomfortable and humbling, but it's not bad. The fear is becoming entitled and lazy. So recognizing those fears, I can just say, we can't do this alone. Thank you. We see God working in you, our community. I don't ever want to communicate to Leo that it's bad to need help because how will that make him feel about himself? The Lord continues to teach such beautiful things through Little Lion Man. As you have helped us, or heard about the help we have received, I pray that you experience support where you need it. You are no less for needing support. You are human. You are loved. 

God bless. 

Still working on those teeth!!