Two Updates in One

June 29th, 2009 I am sitting at my kitchen table this morning with Sierra, my five year old granddaughter, and we are talking about fairies. My mother swears on the Bible that she saw a fairy when she was a little girl What a lovely way to start the day! I have heard from some of you since my last post and want to say how much your offers of help are so greatly appreciated. Sometimes all of this just gets to me and the heaviness weighs on my heart. It doesn't take much though to lift me back up. All of your thoughts, prayers and positive action are all it takes to give me an attitude of hope and renewed energy. Chloe has had a fairly good week, although the trials for weaning her off of the ventilator have not been successful. Her heart rate has spiked over 200 at various times in the week, which is pretty scary and upending when in the midst of it. This is the problem that persists and has not allowed her to go home. She is doing very well taking her feedings through the g-tube, so that part is a blessing. As soon as the breathing issue is fixed, I believe talk of home will become a part of our conversation once again. That won't happen for a while though. This Wednesday, she will have the heart catheter procedure which will determine as much as possible how the heart is functioning. The doctors feel that until the two holes in the heart are repaired, the breathing will be irregular and Chloe is going to need ventilator support. So, if that's what it takes to get the little angel home, we are ready. After the Wed. test, depending on the results, Chloe will have heart surgery on Friday or possibly on Monday. Get your heavy duty prayers ready! At this point, although it is not decided for sure, it looks like it will be an open heart surgery. We all know that will require a much longer healing time and more discomfort for Chloe. It would be fantastic if they decided it could be done without opening her up. What a little warrior she has been! No one can believe how mellow and even-tempered this little one has remained throughout it all. I will certainly keep the updates coming as we go through this week. Sierra has been very patient with me, but I just must go and play this child's Charade game with her now! Then, she goes to work with me for a couple of hours, which will work out well since I am at the Learning Center today. Til later, God bless you ALL! Nancy June 27th, 2009 This is one of those days when I feel extremely emotional and not very positive. I know 'this too shall pass', but the day has not been especially good for me. I spent the past day and a half with my mom, about 70 miles from the hospital and Chloe. She is 85 years old and has her own needs, which are not being addressed as they have been before Chloe. Those of you who are in my age range can relate when I mention the 'sandwich generation." This is the time in our lives when both our children and our parents are in need of us in any number of ways. I have never felt it so strongly as I have the past few weeks. I did have an enjoyable and productive time with Mom, but also went to Jen's house to check on her dog (who is a big loser in the scenario we are living out), do some weeding in her garden (also losing in this scenario) and some additional yard work that there just isn't time to complete. Add to that a landlord who is not in the least bit understanding of the situation and expecting perfection at the house and a hot sun bearing down on my head for a few hours and you get a pretty angry Nancy after a while. I see a family that at times looks to slowly be disintegrating. We are going on 10 weeks here with no particular sign of Chloe going home. It takes a toll on everyone, arranging and rearranging schedules, keeping the family, extended family and especially Chloe covered. We have a small family and not nearly enough help to take care of this situation. I just have to get things moving in this next week! Any suggestions from any of you for bringing community together, fundraising and involving people, please share! as they would be GREATLY appreciated. My brain is on OVER LOAD and I feel as if I am spinning my wheels. I need a point person, if anyone in our close vicinity is willing and able to help, please speak up. I just MUST go to bed. I hope that this makes sense! So, more later. Love to all, and you are soooo appreciated!! More on Chloe specifically tomorrow. Nancy