King of Prussia Day #1

Today was long. I think this will be a concise update. 
We got the Upper GI test done and it showed that his swallow is good, his anatomy is good, and his stomach is draining as it should be. So that’s good but it still doesn’t give us any answers. 
Today at 5:30 we started him on a 24hr feed through the tube with a new formula. This will give him a—hopefully—manageable amount (that he won’t puke up) per hour and also the desired calories over 24hrs. We will see how he does on tbjs and then decide how to move forward. The goal is not to have him on 24hr feeds. But maybe to work toward something overnight to make sure he’s getting nutrition he needs and then during the day we can work on really positive oral experiences. 

Hospital stays are exhausting. Talking to so many specialists and communicating all of Leo’s issues to each so that the plan works for him. It’s a lot. We have been very grateful for the team we have had here. There are two doctors in particular that we really feel hear us out when we’re like, “That plan will be difficult for Leo in this area,” and then working with us. 

We still have no idea the timeline that we are looking at. 

Please pray for:
-Leo to tolerate and just be comfortable on a new formula.
-Leo to sleep through the night.
-Good communication for Brad and I with each other as well as with the doctors.
-For God’s to show us what Leo needs.
-For God to be seen in our hospital room. 
-For some doable plan or explanation for the pukes.

We have already seen the Lord provide in big ways. 
Brad is able to work remotely and be here in King of Prussia with us. We have received help with meals and gas. We have gotten visitors. We have had great nurses. We have our own room. Yay for insurance. Leo’s been happy and making friends and I’m pretty sure he has a fan club. 

https://drive.google.com/uc?export=view&id=1gRjBT3y57SlDjP-ekcj6uhOsMtRXLeV1https://drive.google.com/uc?export=view&id=1gBznJkJhCiuW11y4-IB-6vTEZOMQJ2JBhttps://drive.google.com/uc?export=view&id=1yxtRZyzKdNFIatg0Bji1lIdk7BCv41yqhttps://drive.google.com/uc?export=view&id=1KkKEcYo9yDriWtp0yiwZRXWodagrwAuihttps://drive.google.com/uc?export=view&id=1RUBXXHFLPlGQ_1bTQPIHHSwZL8JS6-en
I also just want to note that there’s a lot of smiles here. I don’t mean to paint an illusion. Hospital stays are hard. But we are ok. This situation could be a lot worse. We are in a good place receiving good care with great community and Leo continues to be a joyful fighter. I just don’t want to show something that’s not truthful. 
There’s hard, bad, good, peaceful, joyful, and a lot more all wrapped up in this. 

Peace out until next time. I’m sure you’ll hear from us in King of Prussia again.

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