ChloeWatts.com

Friday, Aug 13, 2010

Chloe is on a roll. She took Ivey for a walk last night for the first time since December 1st, 2009. Leave it to a dog to know what to do. She was on perfect behavior, and for a Jack Russell that’s a feat in itself. Dana tells me that Chloe actually left her crutch in the middle of the field and she and Ivey continued along without it. Lately she has been struttin’ around the house without even holding on to the walls. She does a quick catch every once in a while, but, overall, she is doing great by concentrating on her right leg and foot.

Her taste testing had a major success today also. She had a root beer float and had a very successful swallow that completely surprised her. She grabbed Dana’s leg in her excitement.

The E-Stim machine that Steve had her use yesterday did its job. Her secretions were down last night. That’s part of what it’s designed to do. It’s also supposed to stimulate the swallow mechanism. Chloe doesn’t exactly like the way it feels but I think she will put up with it if it gets her where she wants to be.

The school nurse coordinator was at the house on Wednesday to evaluate Chloe’s needs. NO SCHOOL NURSE… but an attendant none the less. This will mean Chloe won’t be hovered over. Chloe would actually like to see whomever is assigned to her stay in the office. I suggested maybe we could get a glass case with a little hammer for her and a sign that says break glass in case of emergency. Chloe liked that idea. She will need someone to help her with all her equipment if nothing else.

As if Dana doesn’t have enough on her plate… Her best friends’ mother passed away two nights ago, very unexpectedly. Tine was Dana’s second Mom growing up and she was very close to her. Dana was devastated and will be going to the funeral to help show her support to her friends.

Tim and Kathleen, with Barb’s support, continue to amaze us with their generosity of tasty meals… now Twice a week. We can’t believe it as they could use a job as much as the two of us. Although Dana and I have paid it forward well, it’s still difficult to receive. Guess that part of us will never leave.

Kevin and Laura will be with Chloe tomorrow night as Dana and I finally get a night out. We’ll be at the 11th annual Malino Blues Festival that is put on by some good friends of mine. It’s one of those no pressure events that just feels good. And it’s a pot luck to boot.

We are both excited about the ability to go to Celebration Church this Sunday. We haven’t had the luxury of a Sunday morning off in so long we don’t really know what to do with it. Colin will be still in Canada and Chloe will be with her dad for the night. It meant a little shift for the night nurses, but, now that Chloe doesn’t need the oxygen, everyone is feeling more comfortable about a night or two away from home base.

Dana and Chloe went school cloths shopping at Kohls the other day. It’s a perfect store with the wide isles and limited shoppers. Chloe ended up with a whole new wardrobe and is already enjoying it. She has grown so much from last year. One more step toward total normality.

Walking into school will be one goal that Chloe is determined to meet. I’m pretty sure that will happen. Her speech is much better but still needs work. Her walking is much better but is still wonky. She still doesn’t eat. So, the big concern, by Dana and Me, is how she will be received. We all know what kids of that age are capable of with anything they don’t understand. We will have the discussion with Chloe about how to deal with stupid comments and stares, well before she ever steps foot in the door. It would be great if our fears are never realized, but….

Sleep is still the one thing we all are looking to secure. We’re not really sure why it doesn’t come on the lighter nights at least. Even with all the advances we are never completely at ease. It’s like we work while we are trying to sleep. Gotta work on that.

Be well,
Ron

Sunday August 8, 2010

Sorry for the delay this week. Our website has been hit by a spammer and we have over a 1000 unwanted comments on there. Not sure what we are going to do about it but I hear this type of site is easy to hack.

Chloe continues to show us small improvements. She’s still disappointed however. She wanted to be swallowing by now. The good news is that she can swallow some. Dana saw her swallow a big gulp of her own spit while she was half asleep. That says a lot. She is also being encouraged by Steve to try small bites of beans and the like. Residuals didn’t show any success there though. It’s like she can’t swallow if someone, including her, is waiting for it to happen.

Sandy was down this week to pick Colin up and bring him to Canada with her. She looked good and was amazed with what she saw. Chloe is entirely different from when she was here before. So many advances in such a short period of time. Still not fast enough for Chloe though.

She is finally going to be able to try a night away from the house tonight. This will be the first time since leaving the hospital on March 10th. She will be at her dad’s house for about 18 hours. This will be a good trial run for her to see how her comfort level is being away from the security she feels here at the house. Hope for the best for us all.

Right now she is taste testing her Burgerville surprise left by someone yesterday. Ivey is guarding the area with wishful thinking. She actually hovers around the spit cup hoping for seconds of ABC food.

We were hoping Chloe could join us at the concert tonight but she’ll be elsewhere. My concert starts at 6pm at the Portland Christian Center, SW Dosh and Beaverton Hillsdale Highway. Come on out if you would like to hear some great arrangements but a pretty good big band.

Last you heard I believe was when Chloe told the Obama camp, not yet. She still doesn’t want to go to DC until she can swallow. So we are expecting Oct.

Tim and Kathleen are still our food saints. They were able to spend a little time with Chloe this week. She actually held a conversation with them, which is very unusual, as she doesn’t like to talk to anyone other than family yet. Her speech is getting better daily though. Thank you!

Be well,
Ron

Friday, July 30, 2010

It was a good day today. Everyone was busy doing something. Chloe didn’t get up until noon due to a terrible night. When she got on line with a friend of hers that is vacationing in France, he asked, where were you from 6 am until noon? Funny stuff.

Colin got up about then as well and did some yard work before going off to a friend’s house. He and Dana did have their lunch date in there someplace. Although, we are hoping Dana doesn’t have food poisoning. When I left to take care of Kitty and the garden she was pretty puny.

I spent most of the day tearing the final bad part of the deck off the house. Next it’s four sets of stairs and the deck is back to useable. Well, it’s usable now but there is only one set of stairs that I feel comfortable with.

For advanced planning, I’ve been asked to play with a Christian Big Band for a concert at the Portland Christian Center on the SW side of town. It’s a pretty good band and and the show will be a good one that shouldn’t make anyone feel uncomfortable. It’s a Church Lite and most of the numbers are instrumental. The vocals that will be done are done well. August 8th, Sunday, at 6pm. It’s free but they will pass the plate. This is a 18 piece big band and I won’t be soloing anyplace, but it’s still worth hearing. Chloe and Dana will be there. Colin too, if he’s not in Canada.

While I was outside Dana came out waving two twenties! The young couple never called but they did finally come by and pay for the two boxes of things they got at the garage sale. This restores our faith in the goodness of people and in our instincts. It’s great when something like this plays out.

Be well,
Ron

July 30, 2010, Kelly’s Birthday

Today is Kelly’s 35th birthday. I don’t know how she keeps getting older. She’ll be older than I am pretty soon. Dana and I will be singing happy birthday to her soon.

Chloe had a terrible night last night. She is pushing so hard to swallow that she is aspirating more than we’d like to see. All in all she got about 2 ½ hours of sleep. I think it’s going to take Steve, (speech) to suggest she not stuff so much into her mouth when she is taste testing and during swallowing trials. It’s probably a little counter productive.

The other night Chloe was ready to show off her latest accomplishment. She walked around the kitchen unassisted. It was just a matter of time. Then, at the hospital, she and Dana walked the entire way with just holding hands. The right foot is still wonky but it’s much better and she has better balance and concentration.

Just before leaving to the speech appointment I got an exciting call on my cell phone. Make-a-Wish called to say that President Obama had an opening to see Chloe. And, true to Chloe’s colors, she asked to be placed back on the list for when she can swallow. How many 11 year olds have been able to say no to a President? That’s our girl.

Dana and Colin are going out for lunch today. It’s part of his birthday gift and I’m sure they will have a great time. Chloe and I will sit here and watch the food network if I know her at all. I picked up a tilt-maze game for her last week so maybe I can sneak that in for a little while. It’s great for OT therapy.

Off to start our day. Hope yours is super.

Be well,
Ron

Tuesday, July 27, 2010

Well, the garage sale is done and we are all still alive… barely. It was fun until it wasn’t. At the end of the day on Sunday we had a nice young couple stop by. They were in the entertainment industry and we had a lot to talk about. Dana started a box for them and they ended up getting about $70 worth of things for $40… but they didn’t have enough cash for it all. So, we decided to just let them take the things with the hopes that they would drop by Monday and leave us the $40. Now we are still hoping they do so, however, it is looking like they will have to live with their pilferage and may just feel something each time they use one of the things they took. Oh well.

We are all happy with the release of so much stuff. It’s sometimes more important that the funds they bring in. I’ve already announced I’m done with garage sales.

This week is an every day appointment week. Yesterday Beth saw Chloe for OT. There was a negotiation over the typing. Chloe reasoned that, because she would be taking typing at school this year, she should work more on her right hand writing for notes. Not a bad compromise… but I think we will still play the typing games on the computer.

Today was speech with Steve. Chloe didn’t wake up until 11 am so she was not really on the top of her game when we were on the way to the hospital. It didn’t take long with Steve for her to wake up and work her tests. She also kept the cap on for the entire time and all the way home. She complained earlier that she got winded and gasped with the new plugging cap but, with distractions, she did very well.

Tomorrow both kids are off to see Dr. Duncan to get their teeth cleaned. Chloe is lucky she has any left to clean. She keeps the tooth ferry busy.

Thanks for all the support at the sale this weekend. Also, as usual, thanks to Tim and Kathleen for the wonderful treats they have been bringing at just the right times.

Be well,
Ron

Saturday, July 24, 2010

Quick blog to let you know the Chloe Watts garage sale is going well but there is one more day to let ‘er rip. From noon until 4 pm on Sunday we will be discounting most items by 50%. If you’ve been wanting to help but were afraid Benefit prices would be too high, then this is the day to come on down. We haven’t refused very many offers either.

Chloe made an appearance today which was great. She actually sat out amongst the crowd and smiled and waved. She was there just as a little girl her age bought the Twilight Series Journals. Chloe only journals online so these needed to go to the right person. They did and then she waved to Chloe and said thank you… upon which Chloe returned the salutation appropriately.

Dana and I are dragging but it’s been successful enough to appreciate the toil of production. We will be happy when the last item leaves the property though.

BTW, we will even have her tee shirts at $10 during these hours. If you’ve worn yours out come on over and we should be able to fit you.

Be well,
Ron
PS… Dana still doesn’t have email. We are trying to figure out the problem with MSN.

Garage Sale Weekend 7/23/2010

Just a quick blog as I have to run over and get the garage sale set up. We have tons of stuff to let go of so come on over to SW Hamilton St by Bridlemile School and pick up some treasures.

Chleo’s speech appointment went well yesterday. Dana and I did the trach change to a cuffless trach on Tuesday night. Yesterday, Steve gave her the first cap and instructed her to use it no more than 3 hours a day to start. This completely closes off the trach, in preparation of having it be gone. Steve said, again, in front of a med student, Chloe will absolutely get her swallow back, something we have always known.

Another exciting piece that happened yesterday…. they DCed the O2 machine. This will give Chloe much more freedom. She has not needed the O2 for many weeks now so it’s good to have it officially discontinued!

Thanks for being there for us. Please pass the Garage Sale info off to all your local friends.

Be well,
Ron

Tuesday, July 20, 2010

Tuesdays are usually our full days. Today was no exception, with a cold thrown in for good measure. Chloe’s nights have been restless the last few, due to the cold. She has been awake suctioning much more than normal. Then, of course, that means Dana has been awake more than usual. Like she needed to be fried any more than she is.

All that aside, the decision to go to speech therapy was given two thumbs up by Chlo-girl. She knows she gets taste testing during the session and she doesn’t like missing a meal.

We had hoped to be there with the new cuffless trach today but that was not to be. When will people slow down enough or get rid of enough egos to listen. Aaarrrgggg.. Dana makes two or more calls every time she has to order something. They sent the wrong trach so it’s being overnighted and will be changed after the Wednesday DR appointment. This will be our first “at home” change but I’m sure there will be no problems. Dana and I are confident in our procedures.

Before our therapy appointments I had to slip in a visit to the worst insurance agent office I’ve ever had, Mark Gregory’s Farmer’s Insurance Company. Talk about someone not listening. His front office girl, Kim, was ridiculous. I don’t ever remember having to tell someone to “shut up” during a business call before. Anyway… that’s my black mark remark for the day. Not exactly a recommendation for his office. I’ve changed agents.

So, off to the hospital for the appointments. We arrived there right on time, in-spite-of leaving the house 10 minutes late. Steve and Sierra were there with goodies in hand. Chloe was pale as a ghost when we showed up but regained her color soon after. For someone who doesn’t know what’s going on at these appointments they might think this is stupid. Chloe sits there and stuffs her face while we sit around joking. However, Steve is constantly watching and making suggestions as we are there. Everything is leading to her being able to swallow again.

One big thing to come out of the meeting today was that we will probably be able to get the oxygenator DCed. That will mean more freedom for Chloe. She isn’t needing the oxygen now and it is keeping her from spending the night anyplace but her own home, without hauling all the excess equipment out of the house, resetting it in the other house, and rearranging the night nurse schedules. It will now mean that only the night nurses will need to be rescheduled in order for her to spend a night or two at her dad’s house. It will also mean that the nights might have to be changed in-order to get a nurse there as Dana usually takes the nights normal to Chloe’s visits. It will mean the first time staying away from home or hospital in almost nine months!

After speech we saw Beth for OT. Former goals were achieved and marked off the sheet. New goals were presented and skills worked on in typing and coordination. Chloe really likes Tuesdays for Steve and Beth. When she has fun she works harder. That was the problem she had with some of her nurses. They weren’t letting her have fun.

When I asked Chloe if she wanted to go to the zoo this summer she said “sure.” That about blew me away, as she isn’t too open to going anyplace public. So we will be checking out the Wednesday concert schedule and see what will work for us. Maybe even next Wednesday. I’ll keep you posted in case any of you would like to join in the party.

Thank you for getting me back on the blog. It’s sometimes hard to find material when things are going well. However, remember, “going well” is a relative term. Chloe is progressing nicely but it’s been a very long road with miles of asphalt ahead of us.

Be well,
Ron

Friday, July 16, 2010

My apologies to those of you who want more. Chloe has been doing so well that I have been lax on getting the blogs out. However, Dana tells me that many of you are getting in touch with her and asking for a blog two to three times a week. That will be my new goal.

BTW… if you are trying to get in touch with Dana over the next few days, good luck. Her phone AND her internet are down until Tuesday sometime. She had Qwest there all morning and still doesn’t have a working system. She has emergency phone service only. You can always get in touch with her through my phone, email or the contact page on this blog.

Chloe continues to rock the medical world. We are going to be changing the trach on the 17th, to a smaller size and Cuffless Trach. Steve and Dr. C. both believe she is swallowing secretions overnight and some during the day. That means she is on her way to getting rid of the trach altogether. She will still need her suction machine and the O2 is still on the orders, but she is closer to her goal.

Our last speech therapy she kept the e-stim machine on for a half hour. This is a shocking device that helps the swallowing mechanism. It isn’t having results yet but she is tolerating it much better than in the beginning. The opening that needs to relax in order to swallow is still contracted shut…. most of the time. Steve gave her an exercise to do to help relax that. It’s not easy. When you go to swallow, your Adams apple goes up. He wants her to hold it there for a three count before trying to swallow.

There isn’t a person reading this blog right now that didn’t just try that… right! It’s something you just don’t think about when swallowing. The theory is that by holding in the up part of the swallow that the muscle will relax around the opening and she will have a better chance of getting something to actually go to her stomach. She HAS had success in this area, but we need much more.

Today was a fun day. We spent a lot of the day getting ready for a garage sale. During our family meeting we decided to shoot for the 23rd through the 25th of this month. It means we all need to be available to help gather, sort and price everything. I also have to gather materials to make some tables to hold the smaller things.

Earlier Dana went to get some food and I went to get her brakes fixed… again. They squeak, even with another set of the best pads Meinekie has available. We’ll give it a thousand miles to see if it gets better.

Later in the day we went to Albertsons so the kids could dump the bottles and cans, go inside the store to pick out popcorn and candy and then go pick out a movie at redbox. We chose a comedy to continue our up moods. Old Dogs was just the right movie for this.

Every day now, Chloe continues to do, at least, three hours of tasting. This gets her tongue moving and is greatly helping with the speech. She can actually make a good effort at sticking her tongue out at me now. Fun stuff!

Of all that is going on I’d still have to say Dana is in the biggest mess of anyone. She is taking on the whole ball of wax with care for Chloe. Colin and I are there for support, but she is really working full time, even when the night nurses are there, and it shows. It shows in Chloe’s progress but it also shows in Dana’s complete fatigue, stress, shortness, and, what I’d classify as sorrow. She knows we will get to where we want to be but she has been in this battle way too long. I don’t know what she would do without the community and certain family support. Bless you all!

Thanks for your patience with the blog. I’ll do my best to keep it going on a regular basis.

Be well,
Ron

Monday, July 5, 2010

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