Skip to main content

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.


Popular Posts

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …