Baby Steps

Monday, May 14, 2012


Get ready, this post will be an unorganized rant of information! A lot has happened in a short time so here goes.....

Moving: we rented our house in Chattanooga and they needed to moved in ASAP so I packed up our whole house and we moved last weekend! We are renting a house in west Knoxville and are happy to back. The enormous task of unpacking is almost done and was much easier with help from grandparents and friends. We still have a lot of work but I'm taking my time (for once)

Justin: he has starting taking on some responsibilities from his new position so he has been traveling nonstop. He is in San Antonio this week. He was in Canada and Texas the past two weeks. He somehow got lucky and was out of town when we had to pack up the house and when we had to unpack. Hmm... How convenient :)

Me: I had a wonderful first mother's day! Justin cooked the family brunch before taking off on his trip. Piper had a good day and we spent most of it relaxing and watching movies.

Piper: the past few weeks have consisted of some ups and downs for her. We had planned on weaning her off of phenobarbital because it has such harsh side effects. The first decrease went great. The second decrease seemed to be great too.After the second decrease we saw increased muscle tone and alertness, her smiles returned and she was very happy. Then she started having a lot of seizures again, some of them were a type we haven't seen in a while. This was pretty disappointing because we knew we would have to put her back on the med. She is now back on the medicine but at the dosage of the first decrease. Her seizures are back to 40-50 a day and she is still playful. She stopped smiling again but is still happy and playful. I did take about a million pictures of her smiling so at least I know she still can.

She is getting stronger and more persistent every day. She is trying so hard to sit by herself and is surprising us every day! We got a piece of adaptive equipment that supports her and helps her sit correctly. It's called a kidcart but we call it her "johnny 5" she loves being able to sit up and stroll around. Since her vision isn't great this allows her to see more around her. She loves it!! I think it will really help her but it is not easy to pack up and take with me! I may look like a body builder soon.

I have been working hard to get all of her doctors and therapies set up here but things don't move as fast as I would like. Luckily, I have plenty of things to do with her and she seems to be doing just fine.