Wednesday, February 2, 2011

We are still here

Just without a computer. This is the first time I've actually had time to come to the library and try to get a post up. Lillian is doing so well. She is happy and active. Problems continue with her ears...she continues to have ruptures even with tubes in. For her, a simple ear infection is a BIG deal. It causes her to have lightning high fevers at 104 and feeding intolerance and general discomfort. She is not the most stable walker in the world, so throw in some in ear problems and that really throws the sweet little baby for a loop. Other than slamming into a wall and splitting her head open...and being sick from nasty ears, she is doing well. I did place her into the prek special needs classroom and today at PT conferences I was relieved to hear how well she is doing. She transitioned wonderfully to the classroom and other 6 students and is loving it according to her teachers. She is astounding her speech therapist with her knowledge of testing she is giving her, which makes me feel so good. Due to car problems, I also had to put her on the school bus. This is a normal school bus outfitted for handicapped children and she only rides with kids in her class. It takes them longer to strap her in the seat then it actually takes them to drive to school from our house. (side note, we moved ,yet again, into town hopefully to never move again.) She seems to LOVE riding the bus.

We also had another genetic test done with doctors from KY. It came back with the same chromosome anomaly, but showed that she has a mosaic form of it. I would love to explain that, but I barely understood it myself. Have not even had a chance to google it. She also had another swallow study and video testing to see if she would be a candidate for and adenoidectomy to help with her ear and allergy issues. Unfortunately, she is not. The problems existing in her palate that hinder her speech would only further be exacerbated by removing her adenoids. It is like a vicious little circle...she can't speak bc there is too much space back there, she has very low tone in her mouth which hinders her speech and eating abilities. She is not old enough for further testing or prosthetic devices to help with all this. Not to mention, her poor ears constantly rupturing, which I'm sure inhibits hearing properly....follow that circle??? My heart has been so heavy bc I've longed to be able to talk with her and understand what she wants when she is trying to tell me something. I tell myself I should be accustomed to this road of ups and downs, but I never am. I just keep praying. I wish I could write more, but I have no desire to to have a break down in the library in a room full of strangers.

We are still waiting for results on her allergy testing and I'm sure we will be headed to the OR soon for new tubes.

Hopefully my computer will be back home soon, and I can get some pictures posted. Miss you all!


  1. Okay, lots of things. Thanks for updating! What kind of tubes does she have? We had constant issues with infections and falling out until they put in T tubes. Those have been good for over a year and only a couple of infections.
    Second, what are they doing for her communication? She has enough vocab and fine motor to be able to use some type of device. Not sure if your district does them, but one of your docs should be able to get you in for an augmentative communication eval. We were scheduled for one right before we moved, but that lady left Riley so they canceled on us. I would think someone at Louisville would do them! I read blogs of kids using iPads and iPhones and all kinds of cool things to talk and supplement their signing. Addison isn't there yet, I don't think, but we have an aug comm eval coming up.
    Mosaicism is complicated. Here's my understanding of it. Addi has trisomy 9, so all of her cells in her body have a little extra 9. If she was mosaic (which she isn't), that would mean only some of the cells are affected. They can give you a percentage, but that can be misleading as well b/c even a low percentage could affect a child more than a high percentage, depending on where the affected cells are located. Does that make any sense?
    Okay, I have rambled enough. Keep on keeping on. Love and miss ya!

  2. I'm so glad you are blogging again even if it's at the library:) I hope she doesn't have so many ear infections in the future. The communication devices are a good tool, Isaac only uses 1 for choices, but there are so many options out there. It's frusterating when our little ones can't tell us what they need.