Tuesday, September 29, 2009

Who could say no to these eyes?

We're in trouble...

Fall flower

Here's a nice pic from our evening walk. She's getting pretty good at
holding things, although they all and up in her mouth.

Monday, September 21, 2009

Big-girl spoon

The last couple of weeks have been full of trying new things. We've had some minor setbacks with eating solids recently but between new spoons and thickening, we seem to be back on track. We are still working on lots of tummy time which will ultimately help strengthen Alex's trunk and neck muscles and in turn help her gain more control when eating and hopefully stop aspirating (at least we hope this is the case). Alex is finally showing some interest in holding her own spoon and feeding herself. Her OT suggested we start putting food on her tray and let her play with it but she's much more intrigued by feeding herself with a spoon so that's what we've been working on. I have to admit that giving Alex control of a spoonful of food is hard and I have to just get over her getting messy, especially when the veggies go straight into the hair.

The weather has been amazing lately and we've been spending as much time as we can outside. We squeezed in one last camping trip with the fam a couple of weeks ago and we are laying low and spending a lot of time at home and in our backyard away from the crowds.

Here's a video of Alex's semi-success with feeding herself.




video

Tuesday, September 15, 2009

1st round of pics from Folk Festival

We've taken so many pics lately, and been doing so much this summer that it's been an overwhelming task to go through all of them & pick the best ones to post. We feel like we've really made the most of our hospital-free time this summer.

So I'm just going to start by posting a few pics from the Folks Festival we went to in Lyons last month. We had such a great time - even better than Telluride.


Wednesday, September 2, 2009

Sorry it's been so long. Been a busy summer.

We've been enjoying our summer...trying to pack in as much as we can. We recently got back from camping at Red Feather Lakes for the weekend. Several weeks before that we took Alex to her 2nd music festival - the Folks Fest in Lyons. We actually enjoyed it quite a bit more than the Bluegrass festival, as it was a lot more family-oriented. I'll post pics soon, just don't have them handy right now.

We also had some tests recently which determined that Alex is still aspirating, although it's not certain if it's her food she's aspirating or her own secretions. Of course, the docs are bringing up the G-tube (feeding tube) as a potential solution, but we've decided that we're not going that route unless there's no other option.

She also had another MRI, but despite our calls to the Neuro docs, we still haven't heard any results. Guess we'll just have to wait for them to get around to us. No news is good news, right?

It's hard to believe summer is practically over now. We definitely have made the most of it, but we're dreading winter and another season of respiratory infections. Add to that the concerns about Swine Flu (which targets the respiratory system), and we're certainly planning on keeping Alex on lockdown.

Anyway...just wanted to catch everyone up. Sorry it's been so long. We have a ton of pics to post soon, once we can get them on here.

Until then...