Thank you, Jesus

 I figured I would update since it’s been a minute. Ellie ended up going to the emergency room to get her dressing looked at, and the site where the PICC goes in was oozing some pus. Thankfully , my mom took her so I wouldn’t have to miss work. I was prepared for the worst- another trip to Pittsburgh , getting her PICC removed or changed , and back to square one with nutrition. I always do this. Go to the worst case scenario in my mind. God gently nudged me and reminded me who He is. He is there through all of it and reminds me this is just a small part of his greater plan. I prayed and reminded myself not to worry. 

Meanwhile , when my mom and Ellie got to the ER, her doctor turned out to be a man who attends church with my parents. Someone who has prayed for Ellie for years , but has never met her. Someone who sits in church each week as they pray aloud for Ellie. I don’t believe in coincidences. This was orchestrated by God. It was very reassuring to know that Ellie would be in great hands in the ER. Ellie ended up getting her dressing changed to something new and she hasn’t had a reaction since. Praise Jesus! They took some blood tests and cultures (which all came back negative ) and sent her home. This has been answered prayer. 

Since Ellie’s PICC site is no longer visible through the clear dressing , she has to get it checked and changed every other day, so the home nurse comes more often now. 

We have a pretty good routine down pat for unhooking Ellie from TPN around 5 PM and hooking her back up around 9 PM. I have the unhooking down. Mike mostly hooks her up , but I can do it if I need to with Ellie guiding me on what to do. 

Since Ellie rarely leaves the house , it was extra special for her to have a visitor Thursday night. One of our elders from church , who also leads worship came over to meet with Ellie. He had asked Ellie if she’d be interested in writing a song about her journey and she immediately said yes. So they met and had a great discussion. In case you don’t know , Ellie lives and breathes worship/Christian music. She loves it so much. So this will be a great creative outlet for her. We are so grateful he is taking time out of his schedule to do this with Ellie. 

Ellie also received another surprise today. A good friend from church, and her quilting group made this beautiful quilt for Ellie. Her husband dropped it off today. It is the most beautiful quilt and I can see all of the time and love that was put into making this. If there is a person who would appreciate such a work of art, it is Ellie. She is just thrilled. 

I got to meet a friend for lunch today. This is another thing that was so perfectly orchestrated by God, it gives me chills. Ellie and I are in a Facebook group for SMAS( Superior Mesenteric Artery Syndrome ). A new person joined the group and we both recognized her! She used to work at Ellie’s elementary school and her son was not only in Ellie’s grade but in her class! As soon as Ellie saw her in the group, Ellie reached out to her. Turns out her son has a lot of the same diagnoses as Ellie. We talked today until the bagel shop closed and we had to leave. I felt like I was talking to my own self. Years of being dismissed by doctors, grieving for your sick child , and the pain in watching them suffer. I was able to share what I’ve learned so far and she shared some new information with me. In fact, she called Dr Cruz and her son will have an appointment soon! 

Sitting there talking to her , I felt like I’ve known her my whole life. There was no first time meeting awkwardness at all. What a blessing. 

In the midst of all of these trials, I can so clearly see God at work. I look at life as a giant puzzle with teeny tiny little pieces that eventually all get out into place. This moment in time is only one teeny piece of the bigger puzzle, which I can’t see yet. But God has the entire puzzle planned and mapped out. So I trust HIM because he is the designer and the builder. He will put together the whole beautiful thing in His time. Praise you Jesus.