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.

Wednesday, July 15, 2009

Sometimes you just have to stop and smell the flowers...

By the way, blog friends, I am having computer problems and am not able to post on anyone's pages....I'm here, just computer challenged...going off the grid this weekend to get her fixed...I hope.

Monday, July 13, 2009

Just a quickie post

Lillian is struggling with feedings and constipation. Again. The move has been difficult and things we learned about little Miss are...
1. She does not tolerate heat and humidity AT all.

2. She loves swinging on the porch in her toddler swing

3. Can't figure out of farm livin' is making her junky, although her treatments are pretty low right now. Have had to run some toby last week, but she's junky.

We see her new cardiologist in KY July 20th. Going to the pediatrician Friday to see what his view is on the feeding/pooping front.

I'm just slightly nervous that I have cancelled all her appts up North and she hasn't seen any specialist since her palate repair follow up.

So, anyway, sorry this is brief, but it is still crazy here with everything. Hope to start catching up with all my peeps soon!