For some reason neurology appointments always make us nervous. I think it goes back to the PICU and all of the visits Riley had from a team of neurologists. Some hopeful, some speechless and some not wanting to say anything really.
Yesterday, was the dreaded appointment and we both planned to go along with our nurse. Unfortunately, I woke up in the middle of the night with what I am assuming was food poisoning from the night before so there was no way I'd be able to sit in a car for 30 minutes each way and then wait around a doctor's office for who knows how long. This meant Dave went with just the nurse and I felt awful about it.
The appointment really didn't provide any earth shattering news but reaffirmed the fact that Riley needs as much therapy as possible. They did however provide us with a piece of paper with where her diagnosis stands at right now.
Hydrocephalus ex vacuo
Developmental Delay- Global
That's a lot to see written in print and I'll admit Dave looked defeated when he walked in the door yesterday afternoon. We had lengthy discussions last night about Riley and about how we support her. When Dave asked the doctor point blank what this all meant and what it would mean for Riley's future he couldn't tell him it would go one way or another. Basically, like we've always known she is little. Her brain is young. Only time will tell what Riley does.
Every doctor we encounter can't give us an answer as to what Riley's long term prognosis is. What they do do is encourage us to do whatever possible to get her the help we can. This is why we try to stay as positive as possible. This is why the stories we're told about similar cases mean so much. This is why we have good days and bad days.
Riley was quite a stinker at the appointment and stopped bringing her eyes past midline for the doctor. Right before he walked in she was looking all around the room. During his exam she wouldn't move her eyes for him. As soon as he left she went back to looking all around the room. Dave and the nurse told him all about how she moves her limbs and tries to swat at her trach and hme. While with the doctor she wouldn't do any of this. We joked that the doctor probably thought Dave was exaggerating what Riley does so thankfully we had the nurse there to provide him back up that it is in fact true!
I look at our little girl and mourn the loss of her "toddlerhood" and dream about her future. We'll continue to pray, hope and love her each and every single day. What the future brings is up to her.
Dave, Megan, Logan, Mason and Courageous Riley