Friday, October 23, 2009

Still hard to believe

Lillian has been doing FANTASTIC. Her night time breathing is a little shaky, ecspecially since the stoma is so so tiny now. It truly is unbelievable what a difference it has made to have it out. First off, her feedings have been great. Hardly any vomiting. I've been able to increase the rate and volume that she is getting. She is absolutely full of energy. She is doing things she has never done before. One day, she just walked around looking up. She is babbling nonstop and started saying ma-ma the day after we got home. She giggles ALL the time. Something I don't think we noticed because it wasn't enough air to make noise. It is hysterical. She has found that she can make a high pitched scream and laughs so hard at herself. I could go on and on.

We are getting ready for transition out of First Steps into the school system..our meeting is Monday.

We are still being very cautious about taking her out. We are kinda putting her in a bubble since she is still very high risk right now. The times we have been out, it is difficult to comprehend that we only need a diaper bag. I have so much more to tell, but it will have to wait as Lillian is busy getting into something.

Thank you thank you thank you all for your support and prayer. God is good.


  1. I LOVE it!!! I am so glad to hear that she is doing things she has never done before. It just means this was the right thing to happen at the right time!

    Have a great weekend!!

  2. I still can't believe it! It has to be simply amazing to see how much this is changing her! Is she on oxygen or anything at night? I hope this will be a healthier winter for you!
    Hope your transition goes well. Ours has been...challenging. The preschool and the eval and the case conference and the goals were all easy, and Addison officially started on Wednesday. The transportation is still not worked out. :/
    Great to "hear" from you!

  3. OMG, This is the post I've been waiting for. I'm so excited for Lillian and for you all to just be able to enjoy this beautiful transition. All the newness must be something for Lillian. Looking up!!!! Oh my goodness, now it's your turn to make me cry. God Bless!!!! ENJOY!!!!

  4. YAY! I LOVE GREAT NEWS! I'm so happy for you!!! HUGS!

  5. Oh wow I love it too!!! ma ma that almost the best part and the giggles sounds totally wonderful to me. So glad to hear.

  6. I'm so happy for you guys!! It sounds like she was definitely ready to get that trach out. I'm so glad she's doing so well. She certainly has come a long way!! Hugs!

  7. Good luck with the preschool transition! Glad to hear she's doing so well with no trach!