Monday, June 28, 2010

In an attempt to stay positive...

I guess I have not mentioned much about positives in Lillian's little life lately. Seems I've kept things pretty medical as of late. She is pretty busy, she L-O-V-E-S to be outside. On these very nice HOT humid days, I have to keep the front door locked because she wants to be out there. She most of the time sits on the porch and "talks" to the air. Very cute. She isn't really talking per say, but she has plenty of communication, just can't understand most of it. She has taken to taking us by the hand and showing us what she wants. She mumbles a LOT of stuff, but Lord only knows exactly what she's saying. She also is doing pretend play, she takes two objects and acts like they are having conversations with each other, also pretty cute. She is such a smart little girl and misses very little. I believe she understands most everything that is said and what is going on around her.

She is trying very hard to run, but still not quite there and jumping is still coming along as well. She loves putting everything in her mouth and chewing, but swallowing is still not happening. Her weight has been holding steady at 25 lbs for quite a while and she is starting to outgrow some shoes FINALLY! Wooohoo!

Some concerns I have, one of her ankles seems to be turning in, going to address that Wednesday with her PT. Her airway, of course. Anxious to hear back from one of the doctors about a more solid plan. Sometimes, I just wish they'd say, oh this happens all the time, but they don't. She is on a waiting list to get into the child evaluation center in KY. Her breathing has been good and we haven't used any nebs in a couple of weeks. So far, no ear infections for a couple weeks either. Maybe warm weather is the ticket? I don't know. Allergy testing has been put on hold until her stoma is closed. She did pretty good on our trip to the caverns, but did have a little tantrum at one point...I'm sure the other visitors loved it. LOL.


  1. What to cheer with you on the decannulation! No more trach! woot!

    I know you still have concerns, but am glad you are also focusing on the positives. :)

    Tammy and Parker
    @ParkerMama on Twitter

  2. That's cute that she "talks" to the air and her toys:) She sounds like a smart cookie and you're probably so right about her understanding most of what's going on. I hope the PT will be able to figure out what's going on with her ankles turning in.