Our precocious girl with my friend Lucy (who is on a plane right now to Ethiopia to bring home her son!!!)
With Miss Georgia we finally heard back from the Cardiologist! As we heard two weeks ago, her heart rhythms are normal (which is great) but they are going to take another echo to look at her pulmonary valve. I am SO thankful for this because all along I have felt like this might be the issue. We were told by the surgeon after her open heart surgery that her pulmonary valve was the worst he had ever seen and that the repair he had done on it would probably not last much longer than getting her through recovery. That was almost 2 years ago...so we go in on the 24th for the echo, it is the first she will have had since last November. We are praying for wisdom for the Cardiologist to know exactly what is going on and whether it is time to repair or replace it.
Ravenna's blood work came back and all was normal. This is good and not good at the same time. I am really thankful that she does not have a factor 13 disorder because it had some big concerning things that can happen, if it would have been a fibrin issue however, my understanding is it would have been fairly simple to treat. Now it is either a platelet disorder or one of a bunch of rare syndromes....all of which do not have much funding to find a solid treatment (from what I can tell). So our next step is another blood test at a specialized lab in Portland. She cannot have any medications for 10 days before the test which means our plan for giving her some anti-anxiety meds before the next blood draw won't work :( So we are praying hard for peace for her as we do blood draw #8. Also praying for answers, clear answers.
This is alot to swallow and I have definitely had some nights where sleep is tough to find but above all we feel so carried by the Lord, so surrounded by good friends who ask deep questions and that we are so deeply blessed to get to spend everyday with these amazing kids. Over and over God keeps placing this verse in my life:
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
2 Corinthians 12:9
We walk this in strength, but it is not our own....we are strongest when we pour our hearts out to the Lord, weep over our fears and step out again on the path that we can in no walk walk by ourselves.