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Neurology update

We decided to celebrate my birthday yesterday by going to the neurologist. Ha ha. Really we just had to take that appointment time because that's what was available when I called to schedule. There are other things I'd rather have done on my birthday but it was actually a very productive appointment.

It had been a year since we saw the neurologist last. Thankfully there wasn't anything huge to talk about. Raya was displaying some of her difficult/concerning behaviors while we were there which was nice. Her doctor asked me a bunch of questions about some of what she was seeing and what Raya's like at home and basically just reconfirmed that we need to have the behavioral analysis done. When the first 2 people suggested that to me (her OT & the developmental ped) I felt defensive and a little embarrassed. The idea of someone picking apart my child and picking apart me as a parent is not very appealing. However, after talking to her neurologist about her dramatic increase in anxiety, some of her repetitive and ritualistic behaviors, her sensory issues, and her need for things to be a certain way or be done a certain way, I get it. We need to do it and see what suggestions they have.

Speaking of the anxiety, yeah. She has anxiety. I don't know when it started but it became a problem after we moved/I started classes again/Raya started school. Every time I leave the house lately, she has to hug me 20 times and tell me "bye, Mommy! Are you coming back? Make sure you come back, okay? Don't lose the garage door, okay?" Every time I leave. Even when I walk out of the room sometimes she asks me if I'm coming back. Or she follows me. She has become my little toilet valet. I can't open the lid myself, she HAS to do it for me. Then she goes out and closes the door and says, "Make sure you come back, Mommy." Then there's the part about not being able to go to sleep at night. I had talked about it with the developmental pediatrician too and she suggested a medication that she thought would be a good starting point for taking the edge off of Raya's anxiety to help her relax and go to sleep. When I mentioned it to the neurologist, she thought about it for a bit and decided that she wanted to try something else instead. Forgive me for not giving specifics but yeah, I'm not going to on this. :) Hopefully we'll have the new med today so we can try it tonight. Last night she laid in bed for well over an hour before she finally fell asleep.

We also chatted about her cerebral palsy. She evaluated Raya's grip strength and gait and said that she's slightly weaker on the left side (which backs up everything we've said before with PT & OT). You'd have to know what you were looking for to see it but it's there. Another little sign of CP that we see is that when she sleeps, she usually has her hands fisted with her thumbs on the inside. This is something that is supposed to disappear between 2 and 7 months. The fact that she is able to open her hands is more important than the fact that she fists with her thumbs in (called cortical thumbing or thumb-in-fist posture) when she's sleeping, but it's another small sign that adds up when combined with all the others. Overall she's made really great progress in the last year with her CP. We're going to schedule a repeat MRI of her brain & spinal cord since she hasn't had that done since she was 4 1/2 months old. We're also going to try again to coordinate getting the parental genetic testing done that the geneticist's office staff completely dropped the ball on so that we can hopefully make some conclusions about Raya's chromosomal microduplication. Overall, it was a very productive visit. Since we're trying a new medication, we'll see her again in 2-3 months instead of waiting a year.

After the appointment, we went out for lunch for my birthday. I brought Raya a bag of Fritos and marshmallows but once she saw my giant glass of ice water, she wasn't interested in her food. The waitress brought us extra plates for the girls and Raya politely asked for "3 ices" on her plate while holding up 8 fingers. We ate outside and it was right around 60 degrees but she still wanted her ices.
She had a taste of a grape (which she promptly spit out) and an orange (which she bit a couple times and made yuck faces each time). She wasn't impressed. I didn't really blame her, the oranges were kind of sour. After that she just stuck to eating ice. There was something oddly cute about watching her eat ice off of a plate. :)

 In other news, her stoma is still healing. I think. It's not bleeding hardly at all anymore, which is great. Now all we get out of it is a lot of green boogery goop. It's pretty red all the way around it but doesn't seem infected. She's got a little bit of granulation tissue forming today, which I had anticipated and that's why I had asked for a preemptive prescription for kenalog cream. The surgeon didn't want to give it to us until a couple weeks after the surgery though so hopefully the Mepilex I've been using will keep it at bay until we see him next week. She complains about it hurting but there's not a whole lot I can do that I'm not already doing. It's not as perfect and pretty as it was a week ago but it's still much better than it was before. Pardon the blurriness, it's hard to get a non-blurry picture of a squirmy 3 year old's stomach.
And yes, I need to remove the rest of the 1 month old leftover hot pink nail polish from my fingernails.


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