Wednesday, March 24, 2010

Just a couple of quick pics to show you how much Tatyanna has improved over the last few days! Although she is definitely no longer a morning person, by noon she is becoming more and more like the happy, perky little girl that we used to see. The school has been awesome in accommodating our new schedule and Tatyanna has really enjoyed her last few afternoons with her class. We are gradually starting to incorporate more PT and stretching into her daily routine and while I can't say that she particularly enjoys it, she is responding. We've been trying to get her up in her walker for short bursts during the day as she seems to really enjoy the freedom of careening around the kitchen. The cats, however, do not share the same appreciation for her newfound locomotion and much preferred the warm lap of the sedate Tatyanna over fleeing the kitchen for the sake of their tails. The increased activity does leave her exhausted and 20 min in the walker usually means and hour in the beanbag chair recovering. But, she's definitely improving. Truthfully, I wasn't sure that she'd ever hold her head up again so anything that we see now is a huge bonus.

Saturday, March 20, 2010


Definition of sisterly love - taking the time to cover your sister's eyes, because she is no longer able, before your own during the scary part of the movie- Disney's new frog princess. I wish I had my camera for that moment, it was priceless. (I may or may not have had to leave the room because I got all teary eyed.)

Thursday, March 11, 2010

two steps forward, three steps back....

Just as we feared the effects of the anaesthetic took their predictable toll on our sweet girl. Every time we have had her put under before we noticed, within the weeks following the procedure, a drastic increase in her seizure activity. This time was no different and we were forced to make some necessary med. changes. Unfortunately these changes aren't without their effects and there are only a few hours in the afternoon where I could call her alert....ish. We are hopeful that she will adjust to the new doseage and perk up a little very soon! We are going to try taking her to school for a couple of hours in the afternoon tomorrow. As much as I would love to keep her all to myself, I know that she really does enjoy the other kids and they have really been noticing her absence in the classroom. So, fingers crossed and praying that tomorrow will be a better least for the afternoon. On the upside though, her seizure activity has returned to its previous level of acceptability.

Tuesday, March 9, 2010

Same couch....different day....and looking so much perkier! :)
(pic taken in the first few days home from the hospital)

It's now been 2 weeks since Tatyanna's surgery and although the recovery has been slow in some areas, we are noticing consistent improvements. She is back to enjoying her Nick Jr. and even spent the morning at school yesterday. Her strength is slowly returning and she is able to sit up for longer periods without much support. She does, however, tire very quickly and still spends a large portion of her day snuggling with family on the couch or in her bed. Something surprising that we have noticed is that Tatyanna seems to still have some eyesight remaining. Before the surgery she no longer looked at books or t.v. and did not seem to focus on those around her. We had assumed that it was the disease taking its inevitable toll and were saddened to think that our little girl was now totally blind. In the days following the surgery we started noticing that Tatyanna seemed more alert and was actually focusing on faces and tracking the movement of the nurses in the room. She began to look at the pictures in books as she was being read to and would turn her head to look as the pages were turned. Our assumption is that she simply felt so lousy before the surgery that she had lost all will to do anything that she once enjoyed and it only looked like her eyesight was completely gone but we aren't sure. It doesn't really make any sense.....but I'm certainly not complaining!

The rest of us are adjusting to having a family member who is gt feed and all it entails. The older kids are good at helping me "watch the drips" and are good at sitting with Tatyanna if she is being fed and I needed elsewhere. Lexi is particularly enjoying the influx of fun, new medical equiptment and has been known to careen around the kitchen, using the IV pole as her personal scooter. Old syringes make handy water guns and the cans of formula make a pretty spectacular tower when she stacks the up. :)

Thanks so much for the prayers and encouragement that we have received over the last few weeks, we truly appreciate them and don't want to imagine where we'd be without them! I feel truly blessed to have so many amazing people in my life!