Ready or not......

I am not sure what to say and yet I feel the need to blog. First I want to clarify, that I am purposely being vague with some things. The information I share is about our now 4 year old little girl, who will someday be a grown adult and may not want everyone knowing her personal medical information. So, for the most part, I share what I feel is appropriate to share and thus some details and specifics are missing.

Arrayah has a medical condition that affects her bowels and we were aware of her condition before we adopted her. When prospective parents are given medical reports before matching with their kiddos in an international adoption, the information is limited and many times dated. You make the decision based on what you are given. We were told Arrayah had two corrective surgeries and they were successful. Fast forward to "Gotcha Day" when we were back at the hotel and I saw several things that concerned me. I said to Mark "there is more wrong than we knew about." What that meant, I wasn't sure...my hope... going to physical therapy would take care of the issues I saw in her right leg and feet, but my heart knew differently. I was worried she may need surgery on her back and right knee. We struggled with Arrayah's medical condition in China and it was extremely challenging on the flight home. We got her to the doctor the very next day after we landed. He was concerned with issues and referred us to a pediatric surgeon in Omaha. I appreciated how much this doctor listened to us and wanted to know what we were seeing. He confirmed that our instincts were correct. He ordered an x-ray that initially showed abnormalities in her lower back.

So, numerous other tests were arranged as well as outpatient surgeries with two different doctors, which all happened this Tuesday, September 24th. We continued to hope for the best, but knew it could be extensive. It was and it is. The initial information we received was not what we hoped for and they found more wrong than we even knew. Today, we received the MRI results. It showed that she has a tethered spinal cord. This causes neurological problems, which could contribute to some of the bowel problems she is having as well as the weakness in her right leg, knee, and foot. So Doc #1 (pediatric surgeon) has now conferenced with Doc #3 (pediatric Neurologist) and as soon as possible, we will be going to Omaha for surgery on Arrayah's spinal cord. She will probably be in the hospital for at least 3 days. They are wanting to get this surgery done before mid November, when Doc #2 (urologist) goes and meets with Doc #4 (expert) in Cincinnati, where they specialize in Arrayah's condition. We have found out that she has the rare form...only 5% of females have this. She is unique indeed! Because Arrayah has "very complicated anatomy" as Doc #1 told me today, they will be coordinating services with Cincinnati and at some point, we will head to Ohio for reconstructive surgery for our little girl. As of right now, I have no idea how long we will be there. Unfortunately the previous surgeries were not successful and it has to be redone and as the doctor said today "we only have one chance to get this right."

I really like our doctors. They listen, they take the time to talk to us, they answer our questions, they want our thoughts and opinions, and we feel like we are all working together to make things better for Arrayah. They are also serious, they know the complexity of the situation and while they aren't hopeless, they convey the difficulty of the situation. So tonight, while I am typing this, our little one, who should be asleep, is laughing, giggling, and is playful. She is full of life and her personality just sparkles. It is hard to believe this amazing little girl, has so much physically wrong with her inside. My mind swirls, when I think about all that is ahead and how we will manage everything. Not only caring for Arrayah and the pain she will be experiencing, but traveling, being away from home and our little ones again, managing work and school, and feeling totally unprepared for meeting Arrayah's physical needs....so much to figure out.

And then there is the question....would we have matched had we known? I remember when I was pregnant with Bethany, there was a test that could be given to see if anything might be wrong with her. I didn't want the test...because it didn't matter. If something was wrong, I would deal with it. I would love my child, no matter what. The same applies here. We didn't know, but now we deal with it. Were we lied to, was information hidden from us? Possibly. I guess I look at it as the orphanages are caring for so many children, that they don't necessarily know there is a problem. They also wouldn't have known the extent without all of the tests we just had done this week...expensive tests that the orphanages don't have money for. Arrayah was and is a happy girl, so I doubt some of the things stood out and even if they did...what could they necessarily do about it? I guess if you want to look at not being provided accurate information, the same could be said about Anna. We were told she was "developmentally delayed." She was not. We were told worse and she was absolutely healthy, with no concerns.

So, did we get a bad deal with Arrayah? Did we get ripped off? She is not a business transaction. We don't get a refund. She is a little girl that will now have the opportunity for improved health that she might not have otherwise gotten. If left untreated, her situation will worsen. It also doesn't matter if she was adopted or if she was born to us. You just never know what will happen and what you will end up facing. The good news is, none of this is life threatening. Of course, having an operation on a spinal cord has definite risks, but she is expected to live a long and happy life. So my spunky girl who continues to interrupt me, while she plays doctor to me, may just go on and help others, as she is being helped now. Well, I better go, it seems I have an "owie" that my doctor needs to take care of :) So, keep us in your thoughts. We are feeling the pressure and the stress of it all and we have only just begun. So your supportive words are appreciated, any negative comments can be kept to yourself. No we were not expecting any of this, no we aren't prepared, but ready or not...here we go!