changes....

There has been so many changes with Sorel since the day she was diagnosed, since the day she was born and in the last 6 months. With Rett Syndrome there are constant changes, sometimes its day by day and sometimes its moment to moment. We watch our daughters constantly, a holding of breathe a change in breathing pattern, a flicker of the eye "is that a seizure?", we worry about her tone, we worry about breathing we worry about swallowing its just a part of our Rett Syndrome life, face it we all have a few more grey hairs and some definite wrinkles! That said, there are a ton of decisions us "Rett" parents never thought never wanted to make for your girls. I for one hate having to choose to put my daughter on medication for seizures, and now choosing a different med and not really knowing if it will do any better. We were always so worried about Sorel having seizures and then she had a week with some definite episodes then some definite seizure activity but we did not ever definitively get a video EEG of them, but the neuro did say they were seizures, started her on meds and wallah she hasn't had any. Good right? Well, then there is the side effects, some anxiety, hyperventilating or is that just Rett, ugh! So we agree to switch meds and see.....do I second guess myself, yah of course, do I worry, hmmm, yep!

Since the day Sorel went through regression she has hand mouthed constantly, she has worn braces on both arms to help with the hand mouthing and to try and get her to have more control over her hands, the moment you would take them off back in her mouth they would go, talk about frustrating! About 4 months ago Sorel started having these breathing episodes, breathholding, hyperventilating, stuff that, yep, worried us! But she all of a sudden stopped putting her left hand in her mouth, bittersweet right?! And now all of a sudden she has stopped with the right, its crazy! She no longer has to wear her braces, maybe her right every now and then but rarely. How does this happen? How does one thing like breathing patterns cause something more positive, or maybe its just a coincidence. All and all I guess what I'm trying to say is that there are changes some sad like her regression, diagnosis, hand mouthing, seizures but then there are these moments that change is good, change is light and change brings joy and mostly hope!