Things we are uncomfortable with

Before I even dive into this post I want to say Maria knows that I'm writing this. She gave her approval and has nothing to be ashamed about. Yes, this is personal, but it is also to help others adopting children with disorders such as Spina Bifida understand some of the challenges.

Ok....so, there are certain topics most people are uncomfortable with. Which is rather silly, because EVERYONE pees and poops. If you are one of these people who is uncomfortable with this topic, please do us both a favor and stop reading now.

Spina Bifida is a neurological disorder....meaning that there are issues with the nerves that go from the spine into Maria's legs. Many times nerves get tethered or look like a big knot. Most people with SB have continence issues....this means that they usually do not have control or have limited control over when they urinate or defecate. I knew this was a possibility prior to meeting Maria and high hopes that one day she would be able to have control over her bodily functions. The lack of continence was confirmed when I visited Maria in Bulgaria.

So, wanting to be informed I started talking with other parents who have children with SB....I needed to know what did they do to help their child gain control in this area...what supplies did they use....what issues were there. I also talked with Maria's doctors here about what they recommended. I decided that I needed to wait until Maria had a good handle on English and understood so that she too could have a say in what would happen to her body.

The first step was her urologist. He recommend the use of catheters with a medication to assist the bladder in expanding. We have started this and it has been very successful. Other SB friends helped connect us with the right products that are appropriate for a preteen/teen girl. Some families choose not to go this route for their own personal reasons. Maria and I made the choice because we knew it meant that she would be healthier in the long run.

The next step was making a choice regarding the bowels. A little over a week ago we met on a surgical consult about a procedure for this. We were both familiar with this since we know a young adult with SB that has had it. Towards the end of July Maria will go in for this surgery....basically she will have a port (looking somewhat like a G-tube, just lower) on her lower abdomen. Once this is place and she is healed, she will be able to inject a saline solution into it each night and flush out her bowel...which will take around an hour. Ok, I know this sounds rather gross....embarrassing for a child her age....but it isn't. For the first time she will have complete control over this area and be able to gain even more independence. Having this control is a big deal! It will be a huge blessing. Something she is excited for!

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