Onto what started this whole thing off...
At 8pm tonight I got a call from Ellie's occupational therapist (OT). We haven't met yet and our first meeting is this week with OT, PT (physical therapy), the developmental specialist (DS), and the Early Steps Coordinator. She called becasue she just got back into town froma conference or meeting or something at St. Augastine's where there is a school for the deaf and blind. She met another parent of a child with SOD and a teacher who has a class full of SOD munchkins! She just wanted to call and tell me that she never assisted a child with SOD and she's happy to bring some more insight into Ellie's therapy. But moreso, she wanted to tell me she's going to try to bring me SOD parents to get in touch with because after all, parents are the best resources when you have a child with a rare condition like she has. I definitely share in her excitement and look forward to this meeting, not only for myself, but for what it will do for Ellie!
Ellie at 6 months
She is too beautiful and precious and to think that she has these rare diseases is almost unthinkable! She has been strong since before birth and so have you guys! She will learn to adapt to whatever gets in her way. She might need a push here and there from you guys but I think she will do great on her own too! Can't wait to see her grow and see her personality shine more and more. The last video you posted of her eating peas was precious and definitely showed her personality! Can't wait to see more! Keep on posting and I will keep on reading! Much love goes to her and to you guys!
ReplyDeleteWell, we already know she's an overachiever, cause when she gets something, she gets it good! So there's no telling what this girl is going to accomplish as she gets older. This is a wonderful site too!!
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