ChloeWatts.com

March 11, 2011

Today signals the anniversary of Chloe’s first day of freedom from the hospital. She was released late in the day of March 10th, 2010. It’s hard to believe it’s been this long. Almost as hard as it is to believe how far Chloe has come from December 2nd, 2009! She still tries to fight us on accepting the fact that she Has come a long way. In her mind she remembers when she was just the “normal kid,” doing everything the other kids could do everyday. We are close but I can understand her feelings. I wouldn’t want to be in her shoes either. Although we know her shoes will be hard to fill by anyone following her.

We had our consult with the doctor who will be doing her botox treatment to get her swallowing to start up again. What better list to be on than… Schindler’s List. He’s going to free up her esophagus!

Today we are all watching Japan and sending prayers to all the people affected by the quake. Such a shame to see things like that. The only good part is that it wasn’t a manmade atrocity this time.

After a lot of persuading, Chloe went to a play with her Block Class. Interestingly enough she was so worried about bring attention on herself, that she did. Some of the dodas running the door gave her grief about bringing her suction machine backpack into the play. It took some convincing that no-body would die because it was in there. I love it how people make things up to support their own stories. As it turned out she had a good time and now will probably have an easier time at OMSI and the next play.

Be well,
Ron

February 28, 2011

So… Thursday night was pretty restful for Chloe. Her stats were all well within the norm and “E,” her night nurse, was having an easy night. In the morning Dana went up to relieve E and they went in to take a look at Chloe. She was awake as is often the case, but just barely. Almost immediately everyone noticed that the trac had popped out. It had done that a couple times before. It’s very small and not easily noticed in the dark room with blankets up around her neck.

Being Dana was now on duty, she asked E if she’d like to see an emergency trac change. It was about due anyway, another week at the most. Everything was prepared, except the stoma, the hole in Chloe’s throat. It seems it wasn’t ready to have a new trac introduced. In fact it said, absolutely not! Devine intervention? We think so. It’s believed the trac had been out since about 2 am when Chloe was doing her normal thrashing about in bed during dreams.

Long story short, CHLOE IS TRACLESS! Dana just put a bandaid over the hole and called the doctors. They agreed to just see how it goes. It’s now Monday and all is pretty good. The stoma just seals itself without stitches. Although she still can’t swallow, YET, she is rid of a very frustrating piece of intrusion in her life. We are all ecstatic about the “it just happened” event, that we are feeling just what Chloe expressed, “I’m so happy!”

The good news keeps rolling right in for this family. Everyone is very relieved and excited about Regina and Rob’s new addition, Declan. The pictures are all over their’s and Sandy’s facebook pages and he is one really cute baby. (We guys don’t really believe all babies are cute… but this one is!) One Huge Congratulations is being sent north to Regina, Rob, Sandy, Declan and everyone else that deserves one. You know who you are. Poor Dexter is in for some very confusing days ahead.

Let the Good News Continue! More happiness, less bitterness, what more can anyone ask? Here’s my toast to more mending, happy times, new life, growth and civility in all of our lives.

So… One more huge hurdle passed for our girl. She never takes any of the credit. Who really cares whose credit it is? It’s the destination that’s important in this journey.

Be well,
Ron

PS. When I end these messages with “Be Well”, there are absolutely no restrictions to that wish.

February 20, 2011

Chloe’s appointment was pushed back until March 7th. This is just for the consult, then the procedure will be sometime in the future. My belief is that it was pushed because Chloe is supposed to get her swallow back all by herself. You should have seen how close she was the other night when I told her to just go ahead and swallow a fruit smoothie Colin made. She tried like a mountain climber going that last 10 feet to the summit. She was oh so close.

We have some big guns rooting for her. The Dave Ramsey team keeps her in their meetings and, of course, their prayers. Then there is a former classmate who flies the Popes’ cargo jets. He meets with the Pope regularly and is always asked for an update on Chloe. This happened again last night. And, then there are all of you. What a team! That’s all I can say. Without you this could have been an entirely different story.

We have modified Chloe’s school schedule as she still doesn’t get quality sleep. By the end of the week she was so tired that she was getting sick and having to come home early. So Dana figured out that Wednesday should be deleted to help her recuperate. Of course it didn’t work well the last week since she was already sick. Even with all the days she has missed she’s still a 3.6 student!

Projects tend to wear her down. Last week she was to build the Eiffel Tower. After not knowing how she was going to be able to do it, I got her a kit and she and her dad put it together, painted it and made a base. It was the hit of the class. And then….. she found out she was only required to do a written report about it. HA… Well, she’s getting extra credit at least. We’re going to try and talk the teacher into accepting it in place of the King Tut exhibit she is supposed to “make.”

Dana and I finally get to “go out” today. Well, it’s to a gig I’m playing but it’s something. We’ll go for the two hour dance and then I’ll make her dinner later. Stuffed peppers are always a hit. Lately we have both been seeing a light at the end of the tunnel and are trying to live each day with that in mind. It’s pretty bright. More on that later.

Colin is really getting lessons on opening up. He has made some great strides in that area and things are starting to show. His dad has been taking the role of student/teacher advocate. Colin’s grades have been teenager grades, all over the map. We are all just trying to level them out so he’ll decide college is a better route than the military. We know it will be his decision, but we want to make sure there are no regrets. All he needs to improve is his self worth. He has the brains for college and shouldn’t feel he has to settle for the Marines or something like that.

Time to get this day started. Be well and have a great spring!

Ron

Feb 10, 2011

Yup, I know… No blog for a while now. That’s because we’ve been on hold getting an appointment to see the specialists, two of them, who will perform the next procedure that should enable Chloe to swallow…. for, at least, a while. The big freak out is that she has to go under full anesthesia, and with the sleep apnea problem she doesn’t like waking up. It’s been a bit of a scare the last couple times getting her to breath and wake up. Kind of important.

Then there is the upcoming MRI and she will have to go under again! We are due and would like to have both procedures done at the same time but we don’t know if that’s possible. Hopefully we will find out when we get our consult. People sure take a long time to get things set up, no matter how many calls Dana makes.

So, stand-by for news. In the mean time it’s been the usual colds, school project problems, teenage growing pains and lack of sleep for Dana and Chloe. Things are still moving forward and Dana and I have a vision for a much brighter time ahead.

Be well,
Ron
PS Happy Birthday Crystl. I sure am glad you had that first one 30+ years ago!

January 27, 2011

As we approach Chloe’s 12th birthday we all see light, except Chloe. It’s sad to see her go though day after day unable to voice all the major accomplishments she has made. And then, when she doesn’t know I’m looking, I see her in the bathroom, holding on to the towel rack attached to the bathtub mirror, jogging in place. So, although she isn’t letting anyone know, she is trying, and gaining ground daily. She still fights us on a lot of things, but, I don’t think there is one of us who wouldn’t be fighting some of the things she has to endure, in order to, more than endure.

Don’t get me wrong here. Chloe is a openly happy kid a lot of the time. There is just this underlying sadness that she is still going through all this “medical junk” as she calls it.

Chloe turns 12 on Saturday, but don’t tell anyone, she’d say. It will be just a normal day. She doesn’t want visitors or parties or cakes or calls or any of that. It will be a day of her wishes and, hopefully, happy togetherness. Dana has said, we are just postponing the party. We’ll save that day for when she can actually EAT her cake.

On a very good note… last week her PT fired himself. Chloe asked him if he had a treadmill she could try. After seeing her running on the treadmill he was convinced, “You don’t need me anymore.” And this is a guy who loved to see Chloe at every visit! However, she has gained so much strength that he wasn’t doing anything more for her. It’s amazing to see her just pop up off the floor and walk around the room with confidence, even though she bounces off the walls on occasion. Heck, I do that!

Chloe turns 12 on Saturday and if you’d like to help celebrate please do, on your own. Give gratitude for all the advancements she has made over this past long year and include gratitude for what we know will be the next step, swallowing.

Thank you all for everything you have done for this little lady and the family. From the prayer teams, to the food teams to all the helpers, you know who you are. We are winning this battle and you have been our warriors following the commander, Chloe.

We’ll let you know when the party starts.

Be well,
Ron

January 13, 2010

It just feels we are oh so close to getting Chloe’s swallow back. There are no real signs, however, so much else is getting better that I can’t help but believe the swallow is next.

She is walking better, talking better, writing better and is cooking better. She still has terrible nights sleeping due to the apnea, but it’s those two things that need fixin’. If the swallow comes back then I’d have to say the sleep apnea will get better. After all, she can’t even swallow her secretions.

We do have a doctor now that will be able to do the next procedure on her. They will try and get swallowing to occur by injecting her esophagus with botox. This should relax that muscle enough so it will open. This isn’t a permanent fix, but it opens a time frame that we can really work it. That might just rebuild the memories of what needs to happen.

Not a fan, Chloe got her new leg brace. As are all the tools it’s a temporary assistant to help her get the foot going in the right direction and keep the knee from buckling. The redesign even allows for it to fit within her new boots.

Dana and I have been going through our houses with reckless abandon, getting things set up for a couple big sales. We need to trim the households in order to make the inevitable move possible. No, there’s nothing in the works. We just want to get rid of the unnecessary stuff so that when it does happen it will be a lot easier. It’s amazing how much stuff you don’t need in a house when you finally start seriously looking.

Colin is at the opening of his play tonight. We will be going tomorrow to see him. He always does a good job in this. Entertainment really should be his career choice. He’s good at it and there are a lot of different opportunities for him to pursue. It’s obvious he doesn’t want to be a scientist or engineer. Next summer there is a director’s course he may want to take. They offer scholarships.

Dana is still filling all the gaps when the night nurses are sick or have to be called off due to our schedules. For instance, she will be pulling an extra night on Saturday so we can have a family night out. I just wish she was able to sleep during the day. I don’t have a problem with that, but I’ve been programmed as a lifelong musician. We sleep when we need to. I’ll try forcing her out of her added role on Saturday but we’ll see who wins that battle. She’s pretty headstrong sometimes.

Thank you all for keeping the torches burning for us. It is appreciated!

Be well,
Ron

December 27, 2010

Christmas. What a different experience this year was compared to last! Although Chloe wasn’t too excited about the prospect of going through yet another holiday without being able to eat, we were able to help her turn her spirits around. She actually had a very good Christmas in spite of the non-swallowing situation.

The 11 foot Nobel was decorated just right and Santa provided a lot of packages under the tree. It’s interesting how inventive you can get to make Christmas presents appear when there is nothing to work with other than imagination. Our friends came out of the woodwork as well to help, and, again, we thank you so much. The tree was just $10, and the most expensive gift was probable not much more than that, but everything was well received. We even had a phantom Santa spread some good cheer with four cards for the family under the door. Un-signed but very much appreciated!

Christmas morning was spent at the house and the afternoon saw Chloe and Colin visiting their dad’s house for another Christmas. They were able to play with the new red lab puppy for a couple days. They loved that.

Colin has inspired, at least, two of his friends to get guitars. He intends to be their initial teacher. Rumor has it he might have even inspired his dad to start playing again. Colin sure does like his new amp and British guitar strap. I think those were his favorite gifts. He and Chloe received a mic and cord for vocals also. It will be great to hear them both singing together.

Dana and I were able to spend two full nights together for the first time in I’m not sure how long. It was great to just kick back, watch a Christmas movie and relax. Then we joined friends at a Boxing Day party on the 26th. We used to be regulars there but have missed a few recently. It felt great to be back into what was a remembrance of the past and view of the future.

Tomorrow we have two appointments at Doernbeker Hospital with Beth/OT and Steve/PT. Beth was amazed how well Chloe is doing, however, she still wants quite a few visits before she turns her loose. Steve is working hard to help Chloe swallow again. The last procedure wasn’t the miracle we had hoped for, but it wasn’t expected. What we did learn from the procedure was invaluable however. There is no damage in the area of the esophagus that would inhibit it from, eventually, coming back.

Another part I’d really like to see come back for Chloe is Tears. She still can’t produce any, and I feel they are very necessary for relieving her pain. To see her cry without tears is sad.

When I had to run to FedEx today, Chloe was in the middle of making her Giant Cupcake. This was a gift she received from Mama. When she opened it I felt the entire room warm up and the lights were instantly twice as bright. Seeing that kind of joy is rare but sure welcomed when it shows up. Well done Chloe.

It’s our goal to have 2011, be the year of complete healing. With all she has been able to regain, it’s more than possible this can happen for all of us.

Be well and Happy New Year!
Ron

December 9, 2010

A ten to eleven foot Nobel for 10 bucks! That’s what Dana and Colin found for their house. I chuckled when they were looking for them. Chloe and I stayed at the bottom of the hill at Haggs Tree Farm and watched as first Colin, then Dana, would stand by a tree and ask, “this one?!” Each tree TOWERED over them as they were looking at trees designed to take up the entire living room. We would have had to cut a hole in the roof.

When the supply was exhausted we finally took the muddy walk and hay ride back to the barn for some more tradition. After that we got in the car. Colin was a mess… we hadn’t found a tree. Then Dana suggested we look at their Value Lot. So I pulled over and parked. Chloe and I watched from the car as Colin tried to lift the trees in the $20 lot. It was pretty funny. He couldn’t even stand them up they were sooooo big. Then they moved to the $10 lot. Again they were looking as some radically large trees. Finally Colin was able to get one off the ground. I told them I’d put that tree in a house. It was still tall but not as round as the room and it was really a pretty tree. I figured we could cut the bottom off if we needed to. It was almost as long as the car so I was surprised when Dana was surprised we had to hoist it up into the cut out area of the sky light to make it fit. Now it’s loads of fun telling people she got an eleven foot Nobel for $10.00!!! The ride home produced a beaming Colin the whole way. His face almost broke.

Yesterday we went to an appointment with the Sleep Apnea doctor. Chloe was not a fan! She felt it was a waste of her time to be there, however, it really was good for the doctor to see how well she looks. Unfortunately, she was told the mask is doing her a lot of good and it would be VERY BAD if she wasn’t using it. Not breathing is not a good thing in case you were wondering. Anyway, the doctor did say we would re-evaluate as time went by and her healing progressed.

Next it was off to my house to visit Kitty. It was the first time Kitty has seen Chloe since before the surgery. She was thrilled to see her, albeit a bit confused at first. After homework it was off to the Grotto to hear Colin sing. It was a surprise appearance as he was told we wouldn’t be there due to Chloe being tired and the added expense. The Grotto has a policy of not letting the parents of performers in without paying. Well, with a little prodding of a very non-giving minded business manager in the Grotto office, I was able to get some passes. This lady needs a course in the spirit of giving. You would have thought I’d asked for a million dollars. It wasn’t like we were going to be there for hours enjoying their light show. In any case, with as much as we have paid it forward I’m not shy about asking for something like this. As a performer I demand that when I’m doing a benefit for FREE, I be allowed family guests. It’s never been refused before, although I had to threaten to not perform once, if it wasn’t granted. Like I always say…. Stupid never Stops. And some people keep reinforcing that statement to me.

Tomorrow night is another Benefit Christmas concert that I will be playing for. And, yes, I have passes for the family. Every year we play for the Good Hope Health Clinic with the Jazz Express Big Band. It’s a fun night and we raise a couple thousand dollars for a very worthy cause. That’s something I never mind playing for free at. If you’re interested in attending it’s at the Good Shepherd Church just off Hwy 26 in Boring. 7:30 pm start time.

We are gearing up for Christmas and it sure is a better feeling than last year. The one gift we are all asking for is that Chloe is able to swallow. We had a procedure done on Monday that told us the vocal chords are working and everything looks much better in her throat. The esophagus (that’s the hardest word to spell, even with spell check!) is looking good but it’s still paralyzed. They inserted a balloon into the opening with hopes to expand it and help it retract. It doesn’t have great success but that’s what they have said about a lot of the things that have worked with Chloe. There are more options in the wings though, just if we need them.

If you don’t hear from me before Christmas we do hope that all of you have a Wonderful Christmas or whatever celebration you honor this time of year. Just beware though, if you say Happy Holidays to me you will Always hear Merry Christmas back.

Be well,
Ron

Very early, November 30, 2010 Happy Birthday Ma’Lady.

It was pointed out that it’s been a while since the last post. We have been through Thanksgiving and, as of tomorrow, two birthdays, mine and Dana’s. On T-Day Sandy joined us and we went to Kevin and Laura’s for a wonderful dinner and social. It was good to get the kids out of the house and back into interacting, if ever so little.

All the food was great and the Pino was excellent. We all wished Chloe could join us at the table, but that damn swallow still isn’t cooperating. Very soon we will be trying a new procedure to try and relax the esophagus and get something happening. It’s the next step, however, the doctors are trying to figure out which egg goes first.

It was unusual to have the kids home for a whole week. Colin is guitar boy again with a new electric guitar and small amp. We are keeping it small for a reason… He really is doing well on it for not having formal instructions. Now we just need to get Chloe singing with him. Get her to Work It.

My birthday was very nice. Dana and I were able to get out for a dinner and some time together for a change. Doesn’t happen often for sure. Tomorrow (actually today now) is her birthday and we will have it at the house. Of course, now we hear that our overnight nurse had some terrible news about her own mother on the east coast. She has to fly there tomorrow and will be gone for a week or more. That means Dana will be pulling extra duty, unless she lets me stand in for her.

Things are rolling along at a snails’ pace but I do believe they are still going forward. Chloe’s walking is getting better and she is trying more and more things on her own. The sleep apnea is a pain in the butt for her but she is trying hard to do what is necessary. She’s a very smart girl, so she doesn’t need us telling her why she needs to do something. She does need our encouragement, leadership and nudging sometimes though.

We will be going out for a tree on Saturday. It seems late to me but, at least, we are going out as a family. That will be very nice.

Be well,
Ron

Nov 13, 2010

On Wednesday Chloe went through another swallow test. Although it wasn’t really what we were hoping for it did offer us hope… and Chloe was actually excited. The test showed things were getting down a little further, although they weren’t dumping in to her stomach. What it told the doctor was that it was time to use a procedure of putting a small bulb into the esophagus in order to coax it open. This can be done more than once if necessary and Chloe will be asleep for the procedure.

Chloe had a very good day or two after the test, actually saying she was encouraged again. That’s music to our ears as she has been pretty down lately. The timing isn’t set yet but it should be soon. If it works it won’t mean she’ll be eating turkey dinner on Thanksgiving, but it will be a start.

Both kids are getting their colds back again and Dana has been feeling like crud, so the easy things aren’t even easy. We are trying to keep on track however.

Colin went to a play at the school last night but couldn’t get in. Even though he was 40 minutes early, the play was sold out. Too bad as he wasn’t able to go to his teen group at the new church he is excited about.

I spent a couple days researching a cyber bully/basher who showed up on Colin and Dana’s facebook pages. . This little punk has been terrorizing the kids in the school for a while apparently. When he pulled his tricks on Colin, Dana jumped in to help and he turned his attention to some pretty crude attacks toward her. That completely set me off. So I copied everything he had on there and spent the next two days whittling down his friends list to find who he was associated with. Then I called the school resource officer of the Portland Police and went to the school with the facts. The dean was very interested in all I had and, although the kid disguised his picture and used a fake name, the dean was sure he’d find him after seeing all I dug up. The picture wasn’t disguised that well either. Stupid kid! Don’t mess with my family!!

I’ll keep you posted about the new procedure as soon as I find out for sure. In the mean time, have a great weekend and….

Be well,
Ron