ChloeWatts.com

4/12/10 the night after 4/11/10…

Wow, I just realized the last blog was 9 days ago. Time flies when you’re having fun. And yes, we have had some fun among this nightmare. Last Wednesday night we were at our friend’s church for a promotion of a benefit for Chloe. It turned out that the whole service was about Chloe’s story. It included so many quotes from this blog it felt as though I wrote the service. Then there was the point in the service that Colin’s youtube was shown. It looked great on the big screen and garnished a huge applause along with a lot of choked up people. My friend Alan, was to perform at the end of the service. He came to me later and said he had reservations as to if he could even sing after all that. He did great though.

It was nice to reconnect with many friends from my LEC past. They’re sure were a lot of good people from that church that were displaced after the services stopped. Many found churches other than Celebration Church, where we are, and I just had no idea of their whereabouts.

Then on Saturday night we went to the benefit, featuring the movie “Dreamcatchers.” The producer, Mike Handcock, was on hand and we had some good conversation with this man from down under, New Zealand. Rev Barry Dennis was able to say a few words about Chloe from the stage and that produced some nice comments from Mike when he took the mic. Chloe stood and took acknowledgement. Colin’s youtube was again shown and he took his bows as well. Mike said maybe he’d have him do his next movie.

On Tuesday we brought Chloe to her first OT appointment at Dornbecher Hospital. That went well, however, the OT lady was quite pregnant and won’t be seeing Chloe after that day. This seems to be a theme in Chloe’s care. The facility is very well set up and there appears to be a game plan in place for making the best use of the time. After that appointment we went to the speech therapist. He was great and had an immediate positive impact on Chloe. He had her tasting “Pirate’s Booty” popcorn and cheesy snacks and she chewed away happily! Again, there seems to be a timeline in place for getting things done.

Wednesday we were off to see Dr. Christy Closson…. (Please forgive me for destroying your name….) She is a very nice lady from our church who is head of the eye clinic at the school for the blind. She agreed to see Chloe to figure out what was going on with her double vision. We had her and three other pre-doctors working on her for two hours! This was the most intensive examination I’ve ever witnessed. In the end they found a prescription that would correct all the issues.

On Friday we had a very long day. At 9:45 we were to meet with Dr. Cuyler for a trach change. When we arrived I was surprised to see Chloe’s dad there since he works a lot. At least he finally got to meet Dr. Cuyler. Dana did the change this time with the doctor standing by. Everything went very smooth and I took dibs on doing the next one since she and I will probably be doing that on our own after the next one. Next time Dr. C will be looking at the vocal cords again.

After the change we were off to the eyeglass appointment. Chloe had a ball trying on the various frames, from ‘very intellectual’ to ‘Old Lady Syndrome’ to ‘perfect kids selections.’ She chose a very nice blue frame that will give her a brand new look. I think she’ll be very happy with the outcome.

Nights have still been an issue. We have a night nurse most nights however this is very hard on Chloe. We don’t know what the solution is but Dana and Chloe came up with a plan that we may try out in the future. Apprehensively Dana made her pitch to me and I am open to it because is serves both Dana and Chloe very well. Dana, Sandy and I have been the only family to spend the night with Chloe since the operation so we get how hard it is on her to have anyone else there. Dana gets to make the final decision and, in the end, we will do what’s best for Chloe.

Being a writer and being someone who is very involved in Chloe and the family, it is difficult for me to write without sometimes wanting to write more. Unless you are deeply involved in a situation like we are in you have no appreciation of the difficulties faced regarding others. Trying not to drag them into this is like holding back a dam with one finger. There are times I write a blog and sit on it overnight in order to let cooler heads prevail. Last night was one of those times.

For all of you who understand, who see us at our worst times and still stand by us, who take pleasure from helping, who know the value of community and family, who let their EGOs be sidelined, who can swallow their pride and do the right thing, we say thank you from the bottom of our hearts.

Be well,
Ron