Plan B

We were truly hoping that a miracle would happen in our case with our insurance, and that we could find a way around all the red tape to take SuSu out to Cincinatti later this summer. I know so many of you were praying for us, and we want you to know how much that means to us! We know that God's hand is still in the midst of all that's been happening, and we're continuing to pray that He would show us the right direction to take to get the best care we can for our SuSu. As our Plan B, we decided to take SuSu out to CHOP (Children's Hospital of Philadelphia) earlier this week to meet with yet another pediatric surgeon. Thankfully we instantly felt a warm connection with him, and we sensed that he was a very caring and sensitive physician. What a relief, after a not-so-good experience with a more local surgeon!

Our meeting with him went extremely well, and we left CHOP feeling so much better about our options. However, his opinion was quite different than the other two opinions that we've had, and so we have a completely new perspective to think about. This surgeon is much more conservative than the others, and actually isn't recommending a redo surgery at all. Instead, his recommendation is to do some testing and then begin a bowel regimen program with medications for awhile. If this is unsucessful, we might then consider the Malone procedure (a surgical procedure involving the placement of a tube in the abdomen for irrigations). We were actually excited about this approach, and are leaning toward his recommendations!

So where does this leave us now you're probably wondering? Well, SuSu needs to undergo some x-rays, ultrasounds and MRIs first because there's so much about her that we really don't know. If the MRI reveals that she has a tethered spinal cord, a condtion common in children with IA, then she will need to have surgery to correct this immediately. Obviously we're praying that her spinal cord is healthy and perfect, and then we can focus on helping her with a bowel regimen. The good news is that all of her testing can be done locally, so we won't need to travel out to CHOP again for awhile. The only down side of her testing is that she needs anesthesia for her MRI, although she's so brave and spunky that I think she'll probably do amazingly well!

What a lot to think about with three very different surgeons, three very different opinions! We knew that SuSu's condition was complicated, that the options would be difficult, that the road would be long. We knew that it would be a different kind of journey for us as parents who have never had to make such hard decisions for the medical care for our child. But we just really didn't realize how emotionally draining it would be to be here, at this moment, where the next step is ours fully to decide.

On a lighter note, our SuSu continues to be pure sunshine in our lives! She radiates so much joy and happiness, and is thriving in every way. I feel as if we're truly witnessing a miracle in our Wuxi girl, and how thankful we are to be a part of her story!