Some weeks we cruise along, other weeks seem so crazy, and crazy just seems normal. This is one of those weeks. Monday, AJ met Maggie and I at the GI specialist for her appointment. If we can, we both like to be at the doctor appointments, at least the first appointment with a new doctor. There is a lot of information at that first appointment. We need to be able to discuss what’s going on with Maggie, care for her and also absorb the information. Sometimes its just better with two of us there. I really liked this doctor, she has a plan, so I am hopeful. We will be giving Maggie some meds for a bacterial infection, doing some more stool testing and then our next step is blood work. Blood work is tough, especially since Maggie doesn’t stop moving. There is a lot of AJ pinning her arms down while she screams. Its not pleasant for anyone involved, especially Maggie. We won’t worry about that yet, we’ll get there when we get there.
We have a follow up appointment in 3 weeks with the GI specialist and hopefully by then we have some answers. I really would love to solve her GI problems and would also love if solving those, we stop some of her breakthrough seizures. We had three breakthrough seizures Thursday and Friday, so that isn’t horrible.
Tuesday (today) is Maggie’s IEP. I don’t know what to say about this. AJ has fully taken it over and I’m okay with that. We discuss her goals, what we want for her and he tries to get them implemented. I’ll let him write a blog about it later, but send him your good wishes today. He just got home Friday, work is crazy busy and this week seems to be a little extra crazy too.
If you haven’t noticed we take a multi faceted approach to Maggie. AJ is in charge of education, services and insurance. I’m in charge of doctors, appointments, research and therapies. There is always so much, it just works out best this way.
My in laws Marc and Ellen are coming in this week to visit the kids. I leave for Texas on Thursday, not to hide from them but to go watch our niece Kaylen graduate college. Yep, college. Nothing makes you feel older than someone whose diapers you used to change, graduates college. So excited for Kaylen, I wouldn’t miss her graduation, especially since she was at my college graduation at Baylor when she was only 2 months old. She didn’t buy me a present, so we’ll see what she gets. An eye for an eye.
I sure am going to miss these faces though… I guess they’ll be fine with dad. They were so happy when he got back last Friday, after being gone for a month. I better get the same reaction, even though I’m only gone a few days. 😉