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.

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.

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.

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...

Summer Fun

We can't believe it's already August. It's always fun to see how much we can try to cram into 3 hot months. We did manage to take Alex swimming for the first time recently and she LOVED it! We definitely need to get a few more pool days in before it cools off.

Alex's blood work and tests she had done at Children's last week all came back normal so we think that is a good thing. Our next hunch is one of her new meds is inadvertently causing the fevers so we'll try her off of it for a few days and see what happens. Other than that, Alex is doing great and has been a happy little girl. Nana Carol is here visiting and taking really good care of her. God always knows when to send us an angel :)

Fever, Fever, go away

Things have been going ok this week but have to admit we are a little on edge since Alex's fever is still sticking around. No other symptoms are present so it's really hard to tell what's going on. We'll be visiting Children's in the morning for a check up with Neuro and they will tap her shunt and attempt to do a blood workup. We could really use your prayers for Alex (and mommy and daddy too).