ChloeWatts.com

Friday, April 29, 2010 Happy Birthday Regina!

April 29th, 2010 Posted in Daily News Post

It’s been long enough now between blogs. Dana has some great news to report so I’ll be using a lot of her own words.

“If anyone deserves kudos towards Chloe’s healing it is Steve and his student, Carrie, at Doernbecker. They are SO motivational. Chloe leaves literally ‘dancing’ in the car. We spent a lot of our time laughing. Chloe’s voice with the ‘muir’ valve was much stronger, better enunciated today. She isn’t thrilled but we heard the differences. He recorded it so she can hear the changes.” This is an appoint I really wish I didn’t have to miss!!!

The tag to this story is this: (Dana) “After 5 months, Chloe said, ‘Mama’, with the p.muir valve. They all thought it cute and gave a moment of silence when tears streamed down my face. Pretty good for one who isn’t able to cry much. (oh how I try to get SOME release…it just doesn’t let go)”

Fatigue is such a block to emotion. It’s hard to understand it unless you live it. Some think everything is just going great. Others just keep asking, with closed ears. There are so many that are empathetic, but, even they can’t fully appreciate what goes on in this house and these bodies and hearts. It’s something that, getting the right supplies, receiving a replacement machine or two, having a sunny day, getting the deck worked on, or most anything else just can’t fully fix. Dreams are always interesting when dealing with little or no sleep and then awake time gets blurry.

Back to the Speech therapy… Steve will speak with Dr Cuyler for info on having a smaller trach placed so Chloe can have more of a ‘voice’. The more air passing around the plastic trach the easier it will be for her to speak.

They tasted cheese pizza, the whole thing, an entire Hershey’s bar, 2 packs of gum, ‘cause they couldn’t decide on which one, so they got BOTH for her, mango and watermelon, circus cookies, and a large Dr Pepper in a bottle.

At one point Steve said, “I have no doubt that trach is coming out!” Later Chloe and Dana were teasing each other. Dana would point to the trach and say, “you’re goin’ DOWN!!!” Chloe would react as only she can.

The treatment at Dornbecker is creating new energy for sure. Not to put anything down about Emanuel but Chloe was so weak a lot of the time she was there. The facility at Dornbecker is so much newer and larger that it makes for a very good change.

There is another new school nurse started this week. We are ready for consistency here. This is a major stressor changing all the time. And then there is the supply company that just can’t seem to get it right. Things we needed last week are still not ordered. It will soon be time to change companies.

Kevin and Colin had a date last night for the Bamf film festival at the Bagdad Theater. Kevin thought Colin would be interested cause last year he and Laura saw some 11-13 yr old directors of some amazing films. Colin has shown such interest in the subject that we are doing all we can to encourage more. It’s the old adage: If you only harp on the grades that are not that good then you only achieve a mediocre result overall. Colin’s doing well though. He’s been through a ton himself and there have been speed bumps in school, however, he has shown good interest in bring things back up and is trying new tools to get there.

Yesterday he had a solo at a choir contest. Word has it that all the kids are talking about it… especially the girls. You go Guy!

Today was reported as being horrendous. The night went terribly, her feeds leaked shorting out her Itouch. Her pulse ox beeped forever and she instinctively kicked it off her toe. And, after spending much of yesterday with an upset stomach, she woke up weak and with a stomachache. She went to school but didn’t make it too long. She was home early. Dana had a feeling she should not go out to run errands, and she was right… again. I’d say she knows her daughter better than most parents know their kids.

Tomorrow… or tonight, we should all be at Celebration Church for the Dan Millman talk. We’ll see how Chloe is feeling but it would be nice to have her there. I’ll be playing with the Holy Molys and Colins YouTube will be shown. And everyone really wants to see Chloe, although she is a bit uneasy with that. We always have an escape route set up so if she gets too swamped we can bow out.

Thank you all again for the continued love and support. It’s wonderful having such a large village to help raise and heal this cool kid.

Be well,
Ron