lily’s neurologist appointment
Last week we visited the neurologist for a check-up for the first time since the hospital. We had an appointment with a nurse practitioner because the doctor we were supposed to see was sick. The doctor we were supposed see turned out to be the same one that we had seen in the hospital and of which we were not a fan. So we told the nurse practitioner that we would like to switch to a different doctor for our next appointment. This other doctor was in the office that day and dropped by to meet us and take a quick look at Lily herself. Win Win!
Overall, it was a really encouraging appointment. The nurse practitioner was really impressed with how Lily looked. She said after looking at her chart with all that Lily has been through she was expecting a totally different baby. Lily was tracking well with her eyes at the appointment. They really didn’t see many areas of concern at this point. She wasn’t able to get a reflex in one of her legs, but she wasn’t concerned since it can be hard to check that on a little one.
We are going back in the middle of November to have another EEG done which will determine when she can come off her anti-seizure medicine. They said the last EEG didn’t look pretty. So even though we aren’t sure if she had a seizure, it is still a good reason for her to be on the medicine. If the next EEG looks good, then we will probably start taking her off the medicine. And if there are still spikes and areas of concern, then we’ll probably move to a different medicine that will be better for long term…potentially years.
Lily took her first trip this past weekend to a retreat for our church. Lincoln went with my parents to the cottage in Michigan and had a blast riding a pony, feeding cows on the farm, and walking on the beach. Lily did great and did what she does best…sleeping in my arms. This worked out well at the retreat because I could go where I wanted and didn’t need to worry about nap time, but it’s starting to pose a problem at home. We should probably work on that.
Lily is smiling more, not all the time, but slowly more and more. She thought the bunk bed where we slept this weekend was particularly funny and smiled long enough for me to take a picture. Her first one!
This is a demanding stage of life. And with her challenges it adds even more stress and anxiety. We pray for sanity most days and are thankful for the evening breaks. Over the last couple weeks Lincoln started climbing out of his crib and has transitioned into a big bed. The main change is that he is no longer napping. Ugh! Lily has been sleeping well at night…but needless to say, we all need a little more sleep.
Thank you Jesus for the miraculous healing in our sweet baby. We pray that you continue to work in her little body and that there are no traces of this illness other than the trust and faith in you that has been strengthened in us and so many others.
