Not Wanting To Call The Neurologist

This afternoon, Raquel fell asleep at naptime as I was holding her. I've gotten so used to giving her a kiss, telling her "night-night" and putting her in bed that I'd forgotten how wonderful it is to share that special closeness we had when she was a baby. Instead of carrying her right to bed, I just held her and watched her sleep. She looked so peaceful, I didn't want to move her. Of course, I eventually did.

I'm told by some that they don't know how I do what I do in regards to Raquel. Sometimes I don't know either. She exhausts nearly all of my energy on a daily basis. And that can be really hard - especially considering I'm not just a mom to her, but also a very active and demanding 7-year old, not to mention being a wife first. I'm fortunate to have a husband who understands that if he comes home to me in sweats, my hair in a ponytail, with no makeup on, it's nothing directed at him. Either I (1) forgot and hadn't looked at myself all day or (2) just had one of those "Raquel" days.

Today when she slept, I couldn't help but think about what the future holds for us. I so desperately want to know what she is thinking and feeling. That is what eats me up inside - not knowing. I do know that she uses the majority of her words when I am present. She also saves her worst behavior for me (such as hitting me in the eye with a water bottle at close range), but can also be the most loving and affectionate little girl on the planet - when she chooses to do so.

Unfortunately, since increasing the Depakote doseage at night, I'm noticing that Raquel is becoming more and more unstable on her feet. She's very wobbly and is constantly walking into things and falling down. And, she's bruising easily. Not good. I know I need to call her neurologist but know that he'll want to do blood work and I don't want to go back to the "testing" stage. I promised her we were all done with tests for awhile, and realize now that I wanted to think that the most.

And guess who I heard from today? The school district. The program specialist returned my phone calls from about a month ago. I'm still amazed at how they portray themselves as having Raquel's best interests at heart. She told me that she spoke with Raquel's teacher and he thought everything was fine and didn't know why I'd be calling. Um, hello??? When I said that she wasn't getting the therapy she needed, she became very defensive - until I gave her some specifics. She asked if I was "told" this or "knew" this, and once I said that I "witnessed" it, and was thinking about getting an inter-district transfer, the tone drastically changed. But she said she was the only one there over the course of the summer (not true) and that we couldn't meet until after school starts back up in fall (again, not true). But, I don't really care and I didn't force the issues. I'm going to continue to push therapy in other options over the summer. Again, not convinced this school setting is the most appropriate for my girl. As it stands right now, she will resume school in mid-August in the ortho class she was in before.

I have also been communicating with a parent of a 7-year old boy diagnosed with LKS. We are in the very early stages of this, but it's really nice talking to someone sort of going through the same thing and able give me advice. I'll continue to seek out additional support groups.