After being sick for what seemed like forever (I think it was 8 weeks), including an infected G-tube, the flu, a cold and two bouts of really scary croup; Ali finaly got better and right now I would say that she’s the best she’s ever been!

Now, we are able to push Ali’s tube feeds WAY faster then ever before. We have her taking her milk in an hour as opposed to two hours before she got sick. That’s a huge step because to be able to feed orally for nutritional purposes she has to be able to tolerate her food way more quickly.

She is extremely interested in feeding orally. She even goes as far as to open her mouth when we are eating as if to say, “Hey, where’s my food?”.  She loves, loves, loves Cinammon and chocolate. I feed her baby rice cereal with tonnes of cinammon and/or chocolate grated on it and she smiles and giggles as she has her tastes. Is she swallowing? I don’t know. I think that she swallows a bit of the food but most of it still comes out and drips down her chin or she uses it to blow bubbles. Whether or not she actually swallowing a lot of food isn’t that important right now.  We have so much that we have to work on before she can feed orally as a source of nutrition but the fact that she clearly loves to have tastes and wants to eat is awesome!!!!

Ali had a pediatrician appointment today. The bad news is that she has lost more then a pound since her last appointment because she was really, really sick! The good news is that her doctor is very, very impressed with her cognitive development. He said that we should always aim high for Ali because he thinks that she is going to do very well with this syndrome!

Physically things are okay but she’s still not sitting independently or even close to being mobile. She has a huge desire to move around the room when she’s playing and she does roll to get toys or to look at things but she’s reluctant to “barrel roll” (probably because she hates being on her tummy). I hope that her desire to go places will win eventually and soon she’ll be rolling all over the place. Today she moved herself about two feet by wiggling and squirming on her back so that’s another option for motion I guess!!!

So anyways, right now Ali is doing very well. She’s a happy, happy little girl and she’s learning new things all the time!