Nothing new to report. Same ole...same ole!!! Which in the world of Aniston isnt always a bad thing. Still trying to get adjusted to the new feeding regimen from when we saw the dietician in December. Seems to be going ok, but some days it can be an issue. Everything is all still by tube as it has been for 3 years. We are getting ready to add another medicine within the next week. I will keep everyone posted on how this one works. Its a supplemental medicine to help with mito symptoms. She has found an amazing love for Mickey Mouse Clubhouse which I adore because she hardly ever pays attention to the tv unless we are in the car and she will watch whatever is on that her brother watches. But, literally, my tv has been on a constant Mickey Mouse Clubhouse for the past few weeks unless she is asleep. Bad mommy, here, messed up her feeding formula, last night, for her continuous feeds and gave her two fiber formulas...instead of one with and one without. Yesterday wasnt the best day for me, by far!!! But that slight mistake, last night, has caused us some tummy troubles, today!!! I was able to get a video of her, earlier, trying to turn the pages in a book. She did it a couple times and not so much when I cut the camera on. She just fiddled with the book. To some, it may not be much, but to me, its AMAZING!!! These are all things we didnt know if she would ever be able to do. And by the grace of God, she continues to amaze me!!! We still arent any closer to walking, but her laugh is becoming more distinguished. Her PT said she may be going through a growth spurt and this could be why she doesnt really want to try to walk right now. Its too much for her brain to try and comprehend, so one thing at a time!!! Not that she CANT do it anymore, she just has her mind set in new ventures. I have no doubt we will get there, eventually. As much as she has fought and proven, thus far, I have no doubt in my mind, she will continue to blossom. I still struggle with the fact that I may NEVER hear her talk, but I can tell in her looks that she knows she is loved and she loves us just as much as we love her. God bless you all and we ❤️ each and every one of you for being on this journey with us!!!
Posted on: Tue, 13 Jan 2015 23:03:17 +0000
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