Wow it has been so long since I posted. I wish I could say our lives are back to normal, but that is not true. I think this weather is extra hard on Brooke. Today was not good. She woke up sore and spent most of her day just not up to doing much. I always feel so sad when i have to drag her out of the house when she feels bad. I am thankful she can go to my mom's while I work. At least it is close to home.
We are trying new things at our house in hopes that Brooke might get some relief. Our family has started to eat differently. I have been reading that some people with Chiari benefit from a gluten free diet. So, as much as we can, we are cutting back on gluten. Tomorrow she is going for both an Occupational and Physical Therapy evaluation. We have learned new ways to try and defuse the fits she is having. She still has them but not as bad. I have figured out a few triggers. Noises is a big one, and so is touch. For example, the humming from lights, and the chatter of people talking really bother her. Plus if she is not feeling well, even touching her hand makes her scream. So if I see her getting upset, I use a soft voice and then warn her that I am going to touch her hand. Another thing I have found is she needs to understand what could possibly happen in each place we go. If we are taking a trip to Walmart, I need to remind her it might be loud, there will be a lot of people, it might smell, she might get tired walking, the cart might be bouncy, the cart might hurt her bottom, it might seem like we are there a really long time, it may be hot, it may be cold, etc, etc. Yes I go through list like this everywhere we go. I have started to write things down to help me remember. Plus as I notice triggers, I write them down. This has helped quite a bit.
We are not sure when our next trip to NY is. Her neurosurgeon wants us to pursue a urologist who will help us. I am not sure how to even find one. It is not like you can call them up and say, "Do you feel my daughter has a neurogenic bladder? If you do, could you please write this in her chart without putting her through more tests? Oh and could you do this before her brain is pulled back out of her skull cavity? Thanks!" We know that even with the surgery for Tethered Spinal Cord, Brooke may still be unable to potty train. We also know that she may still have issues with balance and pain. But if it might help...we just want to help her as much as we can. She is already becoming wobbly again. She has fallen down the stairs twice now. She almost fell down our basement stairs, but I grabbed her collar and caught her. This terrifies me because our basement stairs our wooden with a concrete floor at bottom. Plus this is how we enter and exit our house. I have told Brooke and Aidan that Brooke is not allowed to go down the stairs first.
I know this post is a rambling mess, and I thank you for reading past all of it. I am typing while holding a sleeping baby! :) My legs have now completely fallen asleep. I love looking down at a dreaming little face! I will post again soon. Just wanted to get an update out, since many have asked how things are going. Thanks for all the prayers!