Leaving the Baby Steps Behind - April 17

Wow what a week it has been! So many updates and things that have happened that I don't even know where to start so we're just going to walk through day by day:

Saturday: Little Big and I got to take you to a resource fair hosted by a great organization called Kinetic Kids. There were a lot of great vendors and we were able to get contact information that will help us out as you continue to grow and need more things to help you out. There was also a great group that takes medical equipment (like your medical chair that you're quickly out growing) and refurbish them for kids that can't get approval for them. Little Big got to find out the joy of resource fairs as she walked away with a bag full of candy and toys :) After the fair we all went to listen to some great lessons at the Annual Southwest Lectures. It turned into a really long day, but you did so well being out and about all day long.

Monday: We introduced you to a stander. Your PT has another client that doesn't need his stander anymore and it fits you so we are borrowing it for a while. You were not at all happy the first time you were put in it so that we could adjust all the straps, but since then you've done two 10-minute sessions each day with no problems...although getting to watch the GiggleBellies on the big TV while you stand there probably doesn't hurt things :)

Getting things adjusted....

"Mama stop taking pictures and get me out of here!"

Second Day - smiling and dancing in the stander...and looking way too big!

Tuesday: We had your nutrition / feeding clinic appoint Tuesday and it went SUPER well!!! We spent about an hour talking about how things were going, how much you've been progressing, all the different foods you've been eating (and how much MORE you've eaten over the last week), and they listened! The doctor recommended dropping your 12:00 feeding (which is during your nap time anyway). When you wake up, you eat a snack and then dinner with the rest of us at dinner. You are doing so well with eating and feeding yourself...and the floor has been cleaned more often in the last two weeks than I'd care to admit :)

In addition to eating so much better over the last week, you've also been talking up a storm! With the smaller trach size you are able to get more sound out, and with the tubes in your ears you are hearing yourself much more clearly and are speaking much more loudly - it's been awesome!

Anyway, if things go well over the next two weeks with you continuing to eat well without the 12:00 tube feeding and maintain your weight, when we go back for your weight check in two weeks they will drop your 6:00 pm feeding and go from there slowly eliminating your tube feedings until they're all gone! They also gave us permission to start introducing liquids, starting with small sips of water and you have done GREAT with that! It was a fantastic appointment and I'm so thrilled with how it's going so far with the changes.

Yesterday, we went back to Shriner in Houston for a "quick" trip to get your new boots! They are so cute - and have some heavy duty velcro that I think even you will have trouble getting open :)

They are wedged on the bottom (some new wedges just in time for summer!) to help make them level on the bottom since they pull your foot down to help stretch out the ligaments at the top of your foot. This will allow you to continue working on standing and walking without needing to find shoes that fit over your new boots. You did really well on the trip there, finally ate some chicken nuggets at lunch (meat finally!) and enjoyed figuring out how your new cup works to get the water out. The way home, not so much. You were really tired and just ready to be out of the car. Plus, it was pouring and loud for about 3/4 of the way home so that didn't help much. We finally got home and you crashed pretty quickly after your bath.

Whew! Lots going on, a lot more appointments to come in the next few weeks as we move forward and make these giant steps forward!