People who don't see Addi frequently have been asking what actually is happening with her development and so here you can read a list of skills she has lost, troubling behaviors/patterns, and of course any NEW things we are able to teach her along the way. I will try to update this every 2-4 weeks so everyone knows the progress we make or new challenges that we may face.
Since she turned 9 months, Addison has begun losing abilities she previously had. She lost all words/speech, including almost all babbling and syllable sounds. She has not said "Mama" since the first week of September.... That's one of the hardest for me. Her two current sounds she has learned back is "Yayaya" and "Dadada". We hear her working on her "H" sound every now and then too.
Addison has started over the last week having episodes of hysterical crying - kindof like when a newborn baby gets colic, but each episode lasts 20 minutes or so and since she is not a newborn baby, she is a kicking, screaming, thrashing 1 year old who I cannot calm down for the life of me. Just when I'm on the verge of tears, she will immediately stop. Two minutes later she could start laughing like it never happened. We don't if its pain, or what. But it seems unlikely that if she was in that much pain, that she would just recover instantly like that. I guess it can be common in some forms of autism and various diseases that cause regressions though so perhaps its all part of her mystery diagnosis.
She has stopped playing with toys, she would rather just be held and seeks that interaction from someone. She seems to not know what to do with the toys we give her anymore.
She has lost any sort of stranger anxiety, and besides our immediate family doesn't seem to know or care who holds her or who she is left with.
She has lost most pain reception, especially with unexpected pain like if she falls or hits her head on something.
She is sleeping more and more over the past few weeks. We are up to 12-14 hours at night and 4 naps of 1-2 hours during the day, that doesn't leave much time to do anything!
Her low-tone problems started out in her feet, now they include her whole legs, and trunk and neck as well. Her arm tone is rapidly decreasing as well. From day to day, she feels weaker and less able to control her body.
Her left side is slightly weaker than her right, so her smile has just the slightest hint of a droop on the one side, but we think it makes it that much cuter.
One of the more alarming things she is doing is repetitive hand motions - she wrings them, twists them, slaps them, rubs them together and clasps them over and over. Its all very new and its definitely happening very fast, its interfering with the hand control....she is shaky and slow at trying to pick food up now.
Grinding teeth, not just here and there, but hours and hours a day, and every single day for 2 months now. I guess this is also very common in some of the conditions they are looking at for her.
She can no longer point at objects she wants.
Increasing drooling, swallowing problems, not chewing food, etc.
And a few random ones for the end: Air swallowing, gasping, cyanosis of hands and feet form poor circulation, unstable body temps, and little apnea spells when she is tired.
Not every single one of those by itself would be worrisome but I guess it can pretty typical for a kid with some of her neurological symptoms. Time will tell, but I am hoping in a few weeks some of this stuff will have shown some improvement so we don't feel like we are only moving backwards with her development. No matter what, she has shown Adam and I so much courage and beauty throughout this whole ordeal. She makes life go on.