Psalm 119:75

I know, O LORD, that your rules are righteous, and that in faithfulness you have afflicted me.

On the drive back to Martinsburg from Philly, I was able to listen to an excellent sermon that my mom had recommended; the title: “My Suffering in the Hands of God.” I was encouraged in many ways by Pastor Miguel Nuñez’s exposition of Scripture but one of the realities that stuck with me was the claim implied in the verse above, that claim being that God’s providential affliction of His children cannot be divorced from His faithful character. In other words, the affliction that He has orchestrated for my life is part of how He is perfect in His faithfulness to me.

As Leslee mentioned in the last update, Ela had a procedure done on Friday last week. Things went as smooth as they could’ve gone. The doctors were able to insert the PICC line (through which Ela receives her continual dose of milrinone) and she was able to have her G/J tube changed. Ela woke up with little to no issues…right now, it is just a matter of adjusting to hospital life. For Ela, this means being attached to a pole 24/7 (restricting much of her movement), it means having mostly mom around and seeing a lot less of dad and brothers, it means 1-2 shower/baths per day (to try to prevent infection in her arm where the PICC line is), and it means having A LOT of visitors. While I was there (5 days) we had visitors from hospitality, child life, palliative care, various nurses, different members of the transplant team, cardiologists, endocrinologists, etc.

Some of those visits were connected to a new issue that we would like for you to remember in your prayers. For reasons unknown, Ela’s blood tests have been showing inconsistent levels in her glucose. In more than one occasion, her glucose has been lower than it should be and it has been concerning enough for doctors to start doing regular finger pricks. While Ela was strong and brave during the first few pokes, we’ve gone past the point where those are emotionally bearable for a 4 year old so please pray for Leslee to be strong and wise in the way she comforts Ela and for the doctors to find something soon so we can eliminate this part of Ela’s routine.

One of the small ways in which God encouraged me while I was at CHOP was by meeting Rakeesha. That day I was wearing my “Daddy of a Warrior: Congenital Heart Defect Awareness” t-shirt. Rakeesha, the cashier ringing up my lunch, noticed my t-shirt and made a comment on it. She said that she herself has a congenital heart defect called ***drum roll*** HLHS! And that she is 29 years old and very healthy. She still has her original heart and only has to take aspirin for medication. Wow, that our Ela could reach 29 with little to no health issues while only having to worry about taking aspirin. Now, that would be fantastic! This is what we desire and pray for, while at the same time knowing that God’s faithfulness is on display in the afflictions that He plans of us. God is faithful to His children, and this is true in the outcomes that we desire and in the outcomes that we don’t.