It's been exactly a year since we packed the kids in the car and drove 10+hrs to Baltimore for a feeding evaluation. You can read all about it here. Kennedy Krieger Institute recommended Ethan and Addison for their inpatient program. It is a 6-8 week feeding program that has them in therapy three times a day, while they are closely monitored by a nutritionist and nurse practitioner and tube feedings are weaned. We were excited, hopeful that our tube feeding days could come to an end. But just a few days after being home from our evaluation Ethan became very sick and was diagnosed with MDS/Monosomy 7 (you can read about that here). Since Ethan has had an amazingly good season of health over the last nine months, we were given the clear by his hematologist to move forward with the feeding clinic. Then we had to wait for RSV season to end, openings in the clinic and for our insurance to approve it.
First we were told late April, then the end of May, then early July and now late July to early August before they would have two openings. We were moving forward with early August until last week when they called to say our insurance would not approve the inpatient stay. It was a total shock; they have been great so far at approving home health visits, tons of evaluations, procedures and therapists, even our evaluation last year at the clinic.
So this week we're feeling a bit discouraged and frustrated by this news. However, I'm primarily feeling convicted about how little I've taken this to the Lord. I took for granted that insurance was a done deal since they had covered the evaluation. I'm ashamed to say I've spent more time being frustrated about our delayed start date messing up summer plans than I've spent time on my knees seeking the Lord's direction and patience for my hurried heart. My flesh is still wrestling with the timing of this, but my heart fully knows He always has perfect timing. Praying this heart will trust the Spirit's Truth, especially over the next few weeks.
We are going to do what we can to appeal to our insurance. Thankfully, the clinic has a team that is used to making appeals and will do this at no expense to us. The down side of the appeal process is that it could take several months, which could lead us back into RSV season and potentially postpone our inpatient stay until next year....we just don't know yet.
But before we start the appeal process we have one last little window of hope. A doctor from Kennedy Krieger will call the doctor that made the denial decision to further discuss if the inpatient stay is 'medically necessary' for our kiddos. After that conversation the insurance doctor who denied our request can change his mind, which would set things back in motion immediately without the long appeal process. We've been told it will be at least a week before this conversation takes place. Believe me, we're already praying for some divine intervention to take place:)
I've been doing some reading in Hosea the past few weeks; God does a lot of redeeming in Hosea's story. Trusting the Lord to redeem my lack of faith and these seemingly troubling circumstances.
Hosea 2:15b I will "transform the valley of trouble into a gateway of hope"