Monday, June 8, 2009


Everyone is asleep taking naps and though I should be doing something more productive like dishes, laundry, exercising I am attempting to start and finish a blog entry. Things have been crazy and most of the time I feel so overwhelmed that though I want to write down my thoughts and feelings and send it off, I just can't---I guess it is just my way of responding---keeping it to myself till I burst :) It may not be the most healthy thing, but hey it works and keeps me going.

It seems like Jason has been out of commission for the last 6 weeks--first knee surgery and now pneumonia. We thought he was getting better but today he woke up feeling just as terrible as he felt last Thursday. We are going to the doctor in a little while and there is a very likely chance that he will be hospitalized--the last time he was in they told him if he didn't get better he would have to be put on IV antibiotics.

Gracie is doing well other than teething like crazy, in addition to the 6 teeth she already has, four more are working their way up including 2 molars. We had a follow-up cardiology appointment last Monday and things look good, we don't go back in until September!!! Unless of course she needs another cath sooner than later, her last Echo showed that there is a vein or artery that has grown quite large that it looks as if the blood flow in her left pulmonary artery is flowing backwards---we're hoping its just a collateral that needs coiling because if not things aren't going looking so good in her little heart. But we are waiting as long as possible before they want to go back in.

We did try weaning her diuretics this last weekend and we almost had to take another trip up to Primary's...instead I played doctor and put her back on her diuril and called Dr. Jou the next day to tell him what I had done. Looks like she will be keeping her diuretics and weekly blood draws for awhile, least she is off of the ativan and methadone---though they would have come in handy this last weekend, she was miserable and wouldn't sleep or stop crying.

We went to our family doctor today and Gracie got her second round of immunizations; she was so happy the entire appointment until the nurses came in with the shots in hand, then she screamed like there was no tomorrow. She weights 13 lbs 15 oz and is 27 in long--she's so close to 14 lbs, wahoo!! We're all optimistic she can gain more weight on her own so we are holding off on the G-tube, which makes me happy. I think the thought of one more surgery drives me nuts.

Not much new to report developmentally wise, Grace's physical therapist comes again on Wednesday and I'm going to see about getting them to come more often since he is only coming once a month. Though I know how to do the exercises with her, she just seems to do it better for him. Funny, huh?

Yesterday Gracie turned 11 months old, I can't believe its almost been a year. What a year it has been, there were so many times we didn't think she was going to make it but I am thrilled that she has proven us all wrong---YOU GO GRACIE GIRL!!!

Yesterday evening: bathed, pjs and getting ready for an evening walk.