Friday, July 24, 2009

Still holding the Title

Man have I been out of the loop. Back in the world wide web and loving it!! I can't believe that I actually thought I'd never have a computer in my home....LOL. That's realistic, huh?? Anyway.

Lillian is struggling seems day to day with vomiting and constipation. MOTY here messed up the dates for her new Cardiologist, so we are rescheduled for Aug. So two trips in August to KY, so far. I just took her to the Pediatrician just to check her weight and such and although she is no where near being on the chart, her weight to height ratio was ok. She weighed 22 pounds and was 31 inches long. She is highly enjoying the new house and is getting very brave on the steps...she has fallen down said steps now three times (MOTY) which like to gave us heart failure. She is very busy getting into all sorts of stuff and really wants to be outside, but I'm not sure that agrees with her entirely and did I mention the heat and humidity reek havoc on her?? UGH.

As the time draws closer for the new Pulmonologist, the fear I have starts to bubble up. It sounds insane, but I want her to be able to live without having a trach. Yet, I'm terrified of her not having it. Does that make any sense? She is alive because of that small piece of plastic. Terrifying and closing in on the reality of finding out what happens next. It is strange to have such a jumble of emotions about it.


  1. It sounds like Lillian is keeping you on your toes and keeping you busy! I know what you mean about having the mixed emotions..I was sad, but in a strange way relieved that it isn't our time to decannulate. I will keep you in my prayers as the you draw closer to seeing the new Pulmonologist.

  2. Good to hear from you again! Praying for you and Lillian! HUGS!!!

  3. Glad you're back ...again. Lillian is such a little spitfire. Sending prayers for her upcoming appointment, keep us posted.

  4. Glad you are back. I so totally relate to wanting the trach out but wanting the trach in. Definitely like a security blanket. Hang in there MOTY. You're doing a great job, even when you think you're not. :)