MRI and Ophthalmology Results

Zoe on the Upswing

First, I wanted to post that Zoe seems to finally be on an upswing from this latest illness. After three weeks of fever and cough (she is still coughing some but definitely getting better) and a few days of NG tube feedings, Zoe does seem to be feeling a lot better. She did a half day at school yesterday as was so excited to be there. Gavin tells me that Zoe was like a celebrity when he brought her in. All the kids crowded around and wanted to talk and play with Zoe. She of course just ate it up and was smiling and laughing up a storm. I dropped her off this morning for a full day so hopefully she makes it through the day. If not, they will page me and I can pick her up early. The daycare is a five minute walk from my work, so it is very easy to get to her fast.

This past illness Zoe showed a lot more signs of being uncomfortable and in pain than she has in the past. It was really hard seeing her so unhappy for so long. She is usually so easy going. I think the high fever is what made her so miserable. I don't blame her- I would be way more grumpy than she was!

Gavin says that Zoe only weighed 18 pounds (she was almost up to 20 pounds before this latest illness) at her appointment the other day. We are hoping most of that will come back quickly. She has her three year check up soon and we are hoping to see her at that 20 pound mark! We don't stress about Zoe's weight like we used to. We know that she is growing and healthy and will be as big as she is. We know she gets enough to eat (when she isn't sick and we have to resort to tube feedings to keep her hydrated). So the weight thing has become a joke between us. Last appointment Zoe was 19.9 pounds and we were like "Come on Zoe- only .1 to go!"

Sleeping Issues

Unfortunately, Zoe is having some major sleeping issues these past few months. Initially we thought it was because we had a guest staying in the house (Gavin's dad was here for several weeks). But Zoe has continued waking up, screaming in the night. Of course she woke up a lot when she was sick due to her fever going high and her feeling miserable. We are still hoping that since she is feeling better, she will start sleeping better. I wonder if she is having night terrors or sleep disturbances. This is quite common in children with neurological differences and most of the other 1p parents say their children have sleep issues. It can become a real issue when the child is older and able to climb out of bed. For now, even when Zoe wakes screaming at least we know she is safe in her bed and hasn't fallen out.

MRI and Ophthalmology Results

My excuse for posting is to give an update on our most recent appointments.

MRI- met with Neurosurgery on Wednesday. Zoe's syrinx from her T8 to L2 is still there, it has not changed. She does now have another collection of fluid in her cervical vertebrae. We were hoping to be told the syrinx has shrunk or stayed the same. So, not so happy to hear there is more fluid. But we were reassured that as long as Zoe is not showing any symptoms, surgery should not be necessary. He checked Zoe's reflexes (which she usually does not have a typical response to but never has) and her muscle tone in her arms and legs. His concern is the the new collection of fluid could affect her arm/hand control. Due to Zoe's weak muscle tone it would be hard to tell which is muscle and which is due to a syrinx. Despite this, the doctor was very impressed with Zoe's strength. And he kept commenting on how amazed he was at Zoe in her walker. He did not even recognize her initially. We, of course, are quite proud of how mobile Zoe has gotten so we purposely brought the walker in for him to see. We also know it is important for him to see if her leg function is being impaired at all.

Ophthalmology- saw the doctor 1 1/2 weeks post tear duct plug insertion. He says that Zoe's eyes look less dry already and is happy with how it looks. He is not sure of his long term plan for Zoe if these plugs fall out (which they frequently do). But I guess we just have to go with what is working for now. He even reduced the eye gel from four times a day to just once! Zoe does well with getting the gel in her eyes, but once less thing to remember three other times in a day is a nice break for all of us.