Hey everyone-
I'm sorry it has been long. We have just been busy doing normal family things like grocery shopping, walks, and watching the olympics. We spend a lot of time kissing Ellie's cheeks and thanking God that we are not in the hospital and that we are home enjoying time as a family.
Here is a picture of Ellie doing a normal baby thing-ready to go for a ride in the stroller. Adam and I have been going for jogs in the evening while Noah rides his bike and Seth and Ellie ride in the jogging stroller. It has been a lot of fun and a great stress reliever for the whole family!
Ellie has been feeling well since they put her on stronger antibiotics. We are all preparing for the surgery this week. I have been on the phone non-stop with doctors trying to coordinate a nerve biopsy for Ellie while she is under for the bladder surgery. A nerve biopsy was the next step in Ellie's testing. It was always understood that it was an option for testing "if Ellie ever had a surgery where she was put under anesthesia." Since there were no surgeries on the horizon, we sort of put it on the back burner. Well, all of a sudden this surgery is scheduled, so I started talking to doctors about getting it done at the same time. So, things are in the works, but it will take a lot of things coming together at the right time to actually happen. We will see.
The lab will be looking at the myelin in the nerves to see if it is normal or not. If there is a lack of myelin, it means she probably does have a peripheral nerve disorder and we will continue looking down that path. If it turns out to be normal, we need to change directions and reevaluate her testing path.
Please pray for the surgery on Thursday: that it will go smoothly, that Ellie's respiratory issues will not cause complications, and that the surgeons will be able to do the nerve biopsy at the same time. I will update after the surgery to let you know how things went.
Ellie's story is not finished yet. We know that God has great plans for her. We are just so happy to be along for the ride.
peace,
Emily for the Vedras