Just got back from picking up Addison's latest PT evaluation. Physically speaking, she's about your typical 9 month old, which isn't terribly far behind at 14.5 months, but physical therapy is currently her 'best' facet of development so I was a little sad to see that we've only made 1 month of 'progress' in the past 4 months, when she tested at an 8 month level last September.
Trying to remember our 'inchstones' policy ... 1 month forward is still better than 1 month backwards.
Speech and OT are not going great, not much there to report - she hates water, hates anything touching her fingertips, hates when we manipulate her hands to do anything. She hates swinging or feeling off balance. She has made pretty much zero progress in speech, except she's showing a slight interest in toys now. She has started making little obsessive behaviors, where she reaches up and yanks her collar when she's upset or overstimulated. She's stopped waving and clapping mostly, but I am hopeful that soon we will know something about her hands and feet.
She still seems to be backsliding, her tone has gotten poor again.... letting her neck hang when I pick her up, etc.. She will sit in her bed staring... wont cry, doesn't make any noises, doesn't play. I dont know how long she'd do it for, but this morning she was up and just sitting there staring for like 20 minutes. I won't leave her in there any longer than that so I don't know how long she would sit there but today she was soaked through her pj's and all over her bed with pee and poop and literally didn't even notice. I don't know if its just 'out of sight, out of mind' or what, but I would feel a lot better if she would wake up and want me to come get her.
I check everyday for a update on Addison. It breaks my heart that she has so many struggles and the Doctors don't know what is causing them. I pray that God sends you some answers. I really wish there was a Dr. House that could solve this mystery. Hugs and Love to you and your precious baby girl.
ReplyDeleteIf you do not have answers soon, have you thought about taking her to one of the better Children's hospitals like CHOP or AI Dupont? Have you investigated RETT syndrome as her symptoms do match that disorder. Hang in there.
ReplyDeletesending all my love to your family! Addison so many people are fighting for you! xoxoxo Mariah
ReplyDeleteI read this and thought, "Hurray!! She pooped by herself!!" Thanks for caring so much for her and for all the love and encouragement you give her. She really does have the best mama in the world. Hang in there.
ReplyDeletePraying every day for her healing and looking forward to hearing the doctors say "we don't know what happened, it's a medical miracle".
I wish I lived closer to you so I could help care for your other girls. I'd watch them for free for ya =o)