Dr. Reggin showed us all the pictures of her MRI and then showed us the areas that were abnormal. The cysts she had when she was born are now gone. She has hypoplasia of the corpus callosum which means the lining is thin (the white matter), and she has a deviation in the ventricular wall which was caused by the cysts. The findings are nonspecific which means there isn't a syndrome, disease, or name as to what she has. These are abnormalities that are commonly found in developmentally delayed children.
That's it. She will most likely be delayed for the rest of her life but we don't know to what extent. The Guild School found her to be developmentally one month old when she's four months old right now. Later when she's four years old she could only developmentally be one year old, etc. etc. Obviously the older she gets, the bigger the gap. It's just a wait and see kind of scenario. There's no way for any of the doctors to determine or predict what she will be like in five or thirty years. We wait and see right along with them. We do know that it affects all aspects of her life. According to the printout Dr. Reggin gave us, she could have the following neurological problems:
- Delays in achieving motor, language, and/or cognitive milestones
- Poor motor coordination
- Sensitivity to particular tactile sensations such as food textures and touch
- High tolerance to pain
- Difficulty with multidimensional tasks such as using language in social situations, complex reasoning, creativity, and problem solving
- Challenges in social interactions including lack of awareness of the thoughts and feelings of others, misunderstanding social cues such as facial expressions and tone of voice, limited sophistication of humor, and difficulty imagining potential consequences of behavior
- Limited insight into one's own behavior, social problems, and cognitive challenges
I have lots of thoughts and feelings on this whole thing but I have a limited window for writing. Until next time.