We have been on Dr. G's wait list for probably about a year and a half. She is the expert in her field and the one to see in Los Angeles for this supplement. I truly have done tons of research and truly believe that it should make a huge difference for Ian. Of course it might not, but that's the story we've been through so many times before. Gotta try.
I'm nervous, excited, anxious, all of the above. It's a huge deal.
He's doing remarkably well, relative to how we thought things would go. Of course we are still trying to live day by day as things could change medically any time. I read every day about another person beginning to have seizures at all different ages. Just last night someone posted for the first time on the PMG group as his wife, at 38, had an auto accident because she had a seizure. And turns out she has PMG. Crazy.
He is such a remakable child. So loving, fun and silly. He is so charming that so many love him. We are so fortunate for that! But so many things we are still working on:
- Perseveration
- Appropriate Social communication
- Writing
- Articulation
- Toilet use
- Focus
- Anxiety issues
- Sensory issues
- Food stealing
- Sense of safety, which includes walking out the door or across the street without awareness
- Being present to engage with others, or specific tasks
- General delays
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