Abby Now

The short (ish) story…

Abby has a 20p13 chromosome deletion (the tip of her chromosome is missing) which has led to significant developmental delays and epilepsy.   She's been seizure free aside from two episodes of multiple seizures this past fall (2013) when she was sick with a fever.  Her days of having 50 seizures per day ended when she began cranial osteopathy in October of 2012, and we credit those treatments for the miracle of seizure-free days today.  She still travels to San Diego monthly for those treatments and has racked up an incredible amount of miles in the sky.  She is a healthy gal.  Her kidney and heart tests from early on ruled out any major medical issues.

She has been receiving weekly OT, PT and Speech therapy since she was about 8 months old, but we just recently changed direction and she's now receiving Anat Baniel Method "lessons", which is more of a blended, movement therapy focusing on creating new neurological pathways.   She is delayed in every area of development and at nearly 2.5 is not yet walking.  But (a very exciting but!) she crawled across Lucy's room last week on hands and knees which was a very first!  We haven't seen it again but her body knows how and will do it again.  She scoots on her bum to get where she wants to…a very bright, innovative mover, that one :).  She has a few words and roughly 40 signs which has been monumental in helping with communication frustrations.  She gets most of her nutrition form her bottles and eats jarred baby food pretty regularly these days.  Feeding is a stressful challenge with very slow progress.  But she's growing and seemingly healthy so we try to focus on that…since that's all we can do :).  She started putting harder, salty foods to her mouth a few months ago which was a huge step, and now will eat a piece of Pirate's Booty.  Never thought I'd celebrate Pirate's Booty, but I want to kiss the person who invented it.

Abby is on her own path.  Slowly progressing, changing, and delighting us along the way.

Feb 2014