ChloeWatts.com

Monday, July 5, 2010

July 5th, 2010 Posted in Daily News Post

It’s been a long stint without a blog. It certainly isn’t for a lack of good news, there’s plenty of that. It’s not due to a lack of drama. There’s been plenty of that as well. Some of the reason is because there are certain people who have asked that I not include them or their people on the blog. I’ve honored that. However, whenever I don’t mention them or something they have done there is flack. That’s okay if it’s coming at me. It’s not okay if it’s directed at Dana. So let me make it perfectly clear, once again, I write this blog. Dana adds suggestions beforehand, however, she doesn’t edit anything I write nor does she require I exclude anything. I’ve asked for permission on occasion but it has always been left up to me.

All that being said, if there is something you don’t like that is written here, it is written by me, Dana’s fiancée… or depending on who’s ego needs to be inflated… the boyfriend, an acting family member, or some other title you’d like to stick on me. Be sure of this, my company is titled “Truth Writer” for one reason. If anyone wants a battle of words against anything I have written, I hesitate to take on that battle, as I don’t like going to war with an unarmed person.

Dana is still taking on two nights a week as night nurse. This means she is staying awake two days in a row. It was determined that “even family members” could be night nurses for hire so I was asked if I would be willing. It’s about a fourth of what I’m normally paid but if it would be good for Chloe then I’d do it and sleep through the hours I would normally work. Long story short, there were objections and then people with titles that couldn’t think past their nose. The ruling was that I was taking on a role of parent so, therefore, I couldn’t get paid. Cousin Duda who has not been involved in her care could be hired but not me… mainly to placate the objector. Amazing how titles ruin a person’s ability to think rationally. (This should bring on some flack.)

Now to Chloe. She is still amazing and getting a bit more so every day… even if she won’t acknowledge that. Here are some of the big steps and some of the encouraging signs.

The wheelchair is on the chopping blocks. She hasn’t used it in weeks and it’s scheduled to go back to its home on the 7th. We’re done with that. So, for comfort, Chloe took on the walker as her primary support. She used it the last couple days at school even. This was a huge step in self confidence for her.

We were going to PT one day and I mentioned to Dana that I thought Chloe might be ready for a cane of some kind. So we brought it up to Will, the PT, and out came Mr. Blue Boy… a blue half crutch. She used it there and now it is becoming her primary form of support. We have to walk holding her hand but that’s okay. Then, the other day, when I walked her up the ramp she shook loose and walked to the couch by herself… sometimes holding the crutch up and pointing it to where she was headed. Her balance is definitely getting much better… although she sometimes looks a wee bit drunk.

She is using her right hand much more now. We still have to remind her to use it when she’s typing but she does do a lot of other things with it… like punching me when I deserve it.

During speech we used the E-Stim to help activate the swallow. Steve feels that she is swallowing a lot more than she realizes. Her saliva at night is reduced considerably and suctioning is dropping way off. She is even wearing the PasiMuir Valve most of the day and, recently, at night.

Interestingly enough, yesterday morning I lay here wondering why she would have to swallow before we could get rid of the trach. Then, later in the day, Dana spoke with Steve about that same subject. He is very excited with Chloe’s progress and stated, in fact, that she doesn’t have to be swallowing for us to get rid of the trach! There is a step-down process to get there and we are going to start that process ASAP. Monitoring at night needs to step up when this happens but that’s why we have night nurses. She still has to suction and clear the secretions, but she won’t need the trach.

So standby for better news in the days and weeks ahead. She is on a roll and has her own goal and timeline in mind. She won’t watch “Eclipse” until she can eat popcorn… and she really wants to see “Eclipse.”

Thank you again for all your support. The food deliveries are a huge blessing. Kathleen and Tim have been amazing at fixing just the right dish at the right time. Chloe loves them all!!!

Be Well… and thanks for putting up with my rant.

Ron