What is going on

Ok....after a few days my head is a little clearer, I'm processing thing better and ready to share more about what is going on.

Maria's medical from Bulgaria focused on her Spina Bifida. There was no mention of her club feet or curved spine. There was no indication of hydrocephalus, even though 80% of people with Maria's type of SB have it. No shunt...no concerns. Maria has been developing normally....making great progress with academics.

So Tuesday started with over an hour MRI of her head and back. The neurosurgeon we saw had thought that the spinal leak might be due to extra fluid pressure in Maria's head....basically he thought she had hydrocephalus. The MRI confirmed that to be the truth...obviously with Maria meeting milestones and her natural intelligence and the size of her head being normal, no one really had any reason to suspect that Maria had hydrocephalus. The neurosurgeons think the leak is partly due to the pressure in the brain and are recommending a VP shunt be placed. We are currently preparing for this surgery which will occur on Friday.

The MRI also showed what was happening with Maria's SB. It showed that Maria has a split spinal cord....the cord actually divides into two cords around her SB level. From what I have read, this is fairly rare. Not only that but part of her spine is folded over on it's self and between to two parts of the spinal cord. In some ways tethering both parts of the cord so it cannot move freely. The cord needs to be together and something needs to be done with the vertibre between the cords.....then because of her very unique scar, muscles and skin from her sides will need to be used to cover the area and give her more protection in that area. This will be a very complicated surgery, involving neurosurgery, ortho and plastic surgery. There is a chance that there will be further nerve damage....

As if all that isn't enough, we still are dealing with the spinal fluid leaking out of Maria's back. The neurosurgeons are worried about it becoming infected....specifically about her getting spinal meningitis. So, Maria is out of PE and all sports until further notice. She cannot be on the floor, carry her backpack or lay on her back. We also have to keep the area clean, gently cleaning it with a wash cloth and covering it with gauze. I will say that since we have started this I have noticed the area become less pink and irritated looking.

With all this Maria, thankfully has had no symptoms other than the leak. No headaches, no loss of function, no pain. If anything her balance is better. She is strong and we will get through this one step at a time. Yes, there are going to be hard moments, but she is a fighter....we will be stronger when this is done. We have an amazing support system who has offered to help in any way they can. One adoptive mom and daughter even sent Maria a Amazon gift card which we got her some DS games for her to play while healing. Maria's school has also made plans to make it possible for her to have extra work time. They are even open to talking with Maria's classmates about what is occurring so that when she comes back the peers are prepared too. I know many wouldn't feel comfortable with sharing that type of information with their child's peers, but working in a school I know how important those teaching moments can be. Kids see the difference and need to see adults address the differences in respectful and honest ways.

I'm not sure how much time I will have to blog with at least 2 surgeries in our near future, but I will try to keep everyone updated on FB. I have been waiting to post more details there wanting to give a friend time to explain what is going on to the director of Maria's orphanage. That should happen before the end of the weekend. Until all is done please keep us in your prayers.

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