ChloeWatts.com

Nov 5th, 2010

It’s been a while since the last entry, however, things have been going along at about the same pace. Chloe still has the sleep apnea problem and still can’t wear the air mask she needs to correct help this. It’s a situation of something being plastered to your face all night while you try and sleep. Yea, I know, doesn’t make sense to me either. There needs to be a better way.

Both Chloe and Colin are trying to come up with better study habits to improve their school situations. Dana is doing a fine job of making sure they start right after they get home but the communication from them to her is sometimes lacking. Typical for the ages.

Colin’s first concert was last week. We miss Mr. Peters. The kids did their best but I don’t have a lot of confidence in the director. She didn’t even speak to the crowd the entire concert and I saw so many fewer smiles on the kids faces it was a shame. Hopefully things will get better there as it is one of Colin’s favorite things to be associated with.

Chloe has made vast improvements in her walking I believe. She now has an ankle brace that stabilizes her foot enough that she can walk without the crutch most of the time. This is Big toward her goal of “looking normal.” We still don’t have a swallow. The test needed to be cancelled this week due to a cold but we’ll get it rescheduled when it seems right. Personally, I’d like to see it not done for a little while longer. She is now getting serious about her swallow attempts. Let’s see if she can get something going.

Thanksgiving and two birthdays this month will be keeping us on the edge of our schedules. Not sure how much will get done but we do look forward to getting the families together. It would be wonderful if Chloe could swallow her favorite mashed potatoes by then! Let’s hold that as a goal if you would.

The comments section of the website has a glitch. Hopefully it will be fixed soon.

The job searches are still going strong. We accept all leads…

Be well,
Ron

Oct 18, 2010

It looks like we are all finally cold free and moving toward fall. The air conditioners are out of the windows, the storm windows are in place and the moss is getting taken off the roof today. All that is left is for Chloe to begin swallowing.

We missed speech last week, or rather it felt like it. Chloe was in one of those moods that we probably should have just stayed home. We only get to see Steve once a week so it’s rough when we have a wasted week. OT and PT are on hold at the hospital until we get school work caught up. It’s a children’s hospital so I guess we have to get them to start thinking in terms of School Day Times vs Doctor hours. Things have to happen in the evening there in order for kids to continue to progress in school as well as in health.

Dana and I are still in the hunt for a job that will work well with what our number one job is, making sure Chloe gets better and is cared for the way she needs. For Dana that would mean, ideally, a job that she could work while Chloe is at school. At least that would keep her away from the 10 bazillion phone calls she gets during those hours. It would be nice if all medical calls could be funneled through one entity and then just one call with all the information could be made to the caregivers. Hummm…. there’s an idea.

We have a project at the house that requires a video camera. It can’t be a VHS-C or High 8. Ideally it would be a DVD or Mini DV. If you have one we could borrow for a few days that would be great. It’s not something we will need more than that week so we hate to go buy one just for that.

While the four of us were sitting around the fireplace last night the conversation came up as to how long we have been in this battle. Wouldn’t you know Chloe had the exact timeline. Go figure. When I spoke with my oldest daughter, Kelly, earlier in the day she thought the surgery was in the summer sometime. It’s just unimaginable to think Chloe has not had a meal since December 1st, 2009.

So, once again, thank you for everything and keep posted for the day we can yell, Chloe Swallowed. It won’t be too long from now.

Be well,
Ron

Oct 11, 2010 CLEAN MRI

Wahoo!!! Clean MRI per Dr. Kevin Norwood! Today, Chloe, Dana and I were at the hospital to hear the results of Chloe’s MRI of Friday. After waiting in the room for an hour, Dr. Norwood came in. As he handed the report to Dana and looked directly at Chloe, he said, Good Scans. Then he proceeded to completely embarrass Chloe with all sorts of questions about her progress and moving toward womanhood, and giving her a plethora of complements on her recovery progress and looks. As usual, it was a fun time with Kevin Norwood.

It was the news we all have known was the truth but were anxious to hear. It was also a boost for Chloe. You could see her tension lift the longer he spoke with her. Now we can start attacking the final group of goals with a vengeance. In a few different sentences, the report said it showed no change from the last report… and the last report showed no tumor. Dr. Dorsen really Did get all of it.

Last night Chloe had one of those taste bad hick burps while she was wearing her apnea mask. She didn’t like it but when I explained to her that the only way the taste could reach her mouth was via the esophagus, meaning it had to open to let things through, that made her smile widely. So she said, “okay, maybe tomorrow I’ll try swallowing again.” After all, if it works one way it must be able to work the other. And eating again is Chloe’s biggest wish.

Both Colin and Chloe are scratching their way back with schoolwork after a long bout with colds and flu symptoms. Dana even held off on a week of OT/PT/SP at the hospital so that Chloe wouldn’t miss any more school. She also has the hospital trying to find a way to get Chloe there at a later hour so that she Won’t miss class.

After the appointment we brought Chloe directly to school, where she will have a week to catch up, as most of her class is at outdoor school. On the way up the hill we got to see the airplane whose pilot decided the soccer field was a good place to land last night after the engine stopped. He was one lucky pilot and his plane was a useful school assembly subject for the morning.

It’s Thanksgiving in Canada so I know our Canadian based family is celebrating today’s success. Everyone has been so supportive in the quest for these results and we hope you all will do your own little celebration dance. What we are hoping for is a return of the swallow so Chloe can join us for turkey dinner on our American Thanksgiving.

Thank you all and keep the prayers coming, they work, if you believe it or not.

Be well,
Ron

Tuesday, Oct 5, 2010

Back in school, however, like so many others in the area, Chloe missed a week to the flu. Like she doesn’t have enough on her plate… Colin was also a victim but Dana and I danced around it, thank goodness. Now Chloe has a week of work to make up. The good and bad part is that she will have a free week when her class is at outdoor school. The bad of that is she won’t be at outdoor school. We just couldn’t figure out how to make that happen. It’s a shame as it’s only the 6th grade that gets to go.

Make-a-Wish called again, and again Chloe turned down the trip to visit President Obama. We need to get this swallow awake so she is able to enjoy the entire trip without having to suction all day long and is able to eat without the use of a G-Tube. We asked them to wait, at least, four months before trying again.

The leg brace came last week and Chloe isn’t happy about it in the least. She feels it’s a step backwards, even though we tried to explain that it’s a short term tool to help her regain her walking “normally.” She so wants to fit in as a “normal” 11 year old. She wants that switch to be thrown into the on position so everything will come back right away.

One good tool she really is trying to use is the breathing machine. She does a “treatment” for an hour or so before she goes to bed. It seems to be of great assistance. She sleeps much better at night now and her heart rate has dropped to 91 many times. This is as low as we’ve seen it since December. The pulsox doesn’t beep until around 5:30 or 6:00 when she is in deep rem-sleep and it hasn’t stayed like it was. Dips to 73 are what I saw instead of the 50s that were happening. The goal is to wear it all night though. We don’t want her killing brain cells, now or when she’s in college… if you get my drift.

Firebolt is at the house for two weeks while his regular home is on vacation. Dana says the crickets are so loud she doesn’t know if she’ll get much sleep when she is overnighting with Chloe. The new cage takes up the entire top of her desk now so rearranging is in order for the supplies. BTW, Firebolt is now, Ms. Firebolt after a surprise drop of eggs. Now, if this Bearded Dragon sprouts wings and starts to breath fire we’ll really have something.

Colin is going great guns with his guitar. It’s amazing how many training videos are on the computer for guitar. He is on there daily and putting together quite a few songs. He even started his first band. Although there are only two of them in it right now and there isn’t anything really resembling a band or gigs yet, he has the right mindset.

It was great for me to get away and visit my youngest daughter’s family in NYC. Violet is turning 3 on Halloween. She’s a chatterbox and loads of fun to be around. I can’t wait to get these kids and my five grandkids together someday soon. That will make for an exhausting day for sure.

Time to start the day. Hope all is well with everyone out there. We do so appreciate your support and prayers.

Be well,
Ron

Sept 25, 2010

It’s 3:42 am and Chloe and Dana are sleeping well, although I don’t know how Chloe is sleeping at all with the cold she has. It’s as bad as they get. Talk about a double wammy. You have a piece of plastic stuck in your throat and then your nose is plugged. Top that off with the trach getting plugged with some ugly junk and you have to work at each breath.

Her new breathing machine arrived yesterday and she has spent a couple hours on it already. She did great while watching TV tonight. She kept it on for an hour without any problems. The goal is to have her sleep all night with it so she doesn’t desat. Even having it on during the awake time is like a treatment and it helps her sleep and hold her stats up. So far so good tonight. Nothing scary although she sounds terrible at times.

Dana was supposed to take the night shift tonight but I was able to convince her that she needed to sleep. She just wants to do it all. She’s a great protector but she needs to protect herself as well. Hopefully tonight will recharge her batteries. The kids will be at the other house tomorrow and Sunday nights. Dana lives for Sundays when she can be away from everyone and just chill in the quiet. It’s about the only day the phone doesn’t ring off the hook from the medical areas of our life. She just puts her Please Do Not Disturb sign on the door and goes into her cave.

Tim and Kathleen continue to bless this house with some wonderful meals. Dana said tonight, it’s such a relief to know she doesn’t have to cook some nights. She can just put it out and let everyone help themselves. Even Chloe can help herself. She is doing her very best to be independent.

These nights certainly get long and I’m not sure how the night nurses do it night after night. I’m just happy we have had them or Dana would be staying awake seven nights a week.

We were going to go see the Swifts dive down the chimney tonight but Chloe really wasn’t in any shape to do that. But if anyone here in Portland has not seen this event, I highly recommend it. It’s amazing to see the aerial ballet and then the pinpointed accuracy of their dive into the safety of the large brick chimney.

Time to work on my Dave Ramsey course material. I’m scheduled to start a new class on Tuesday. Without the Financial Peace University principles neither Dana nor I would have been able to maintain through the past ten months. It’s amazing what we have been able to accomplish with so little.

Enjoy your fall and… Be Well.

Ron

Sept 23, 2010

Today the machine to help Chloe breath at night is supposed to arrive. I hope so as Dana needs the rest. She stays awake every night on pins and needles. When she does drift off, the night nurse has to move and, being right over Dana’s bedroom, she wakes her. Something has to break in her favor soon!!!

On the brighter side, Chloe is loving school. She adores her aid that walks the halls with her and she is making new friends all the time. Her principle even introduced her to a class as his new favorite student. We were pretty concerned, to say the least, about her starting middle school and getting picked on. It’s been just the opposite experience, which is terrific.

Dana and I were able to attend her parent night at middle school last night. They even had a bar-B-Q picnic for everyone before the classes started. It was good to be able to be there and see just what she has to go through during the day. They have it worked out pretty well and everyone is very supportive.

Colin has taken on more at school this years also. Dana represented us at his parents night, as I was in New York with my youngest daughter and granddaughter. It turns out that all his teachers really like him and see that he is trying. One small step for…. ha.

We are getting close to getting the trach out. We will do another swallow test after we see that she is handling the oxygen machine overnight and her stats stay where they need to be. This device that she will need to sleep with is a sealed nose mask, held on by a velcro head strap arrangement and attached to a tube the size of a garden hose that goes to the pressure oxygen. When she goes into deep sleep the machine will breath for her if she doesn’t. It is constantly giving bursts of air to her but will increase as needed. The problem with not breathing…. other than the obvious… is that you can kill off brain cells with too little oxygen and too much CO2. We all know she has plenty of brain cells but we’d rather keep what she has completely intact.

We are on a reduced schedule for rehab now. With school, homework, tasting and all, it’s just too much to go two or three days a week. And, we have discovered that the math class is the one that will take the hit every time she needs to go to Doernbecher. We are trying to figure that part out but, for now, that’s the way it is.

Be well,
Ron

Sept 12, 2010

9/11 and Dana and I got to participate in the “First Responders” banquet. It was rubber chicken, toothpick green beans and a very good appetizer area. We had to be there for seven hours however, as I was hired to play the gig. As it turned out we had plenty of free time to be on a “date” for a change and still have some musical fun and profit. There were a couple good speakers and I was surprised to learn it was a free even, open to anyone who registered online. So keep it in mind for next Sept 11th. It will be happening again and I felt it was worthwhile.

After a fairly short night we headed out to meet Chloe and the rest of her families for the Hero’s Awards of the Children’s Cancer Association. It was held downtown at the World Trade Center courtyard. Very appropriate. Although Chloe, thank God, never had cancer, the awards are given to kids who have shown great values when faced with a life threatening situation. The picture the committee picked out was a beautiful one of Chloe and will be on display around the northwest for the entire year. It was fun when the local photographer asked us to recreate the picture right there next to the traveling picture.

Unfortunately Chloe wasn’t feeling comfortable at the event, as there were a multitude of people there and she is not a crowd type kid. She made it almost to the end of the three and a half hour event, mainly due to the fact that a good school friend joined her at our table. She was fading fast and needed her feeds so Dave and Ramona brought Colin and her back. That meant she would miss the most emotional event of the day, the releasing of the doves. We were assured that she would be able to do this again next year, and actually hold the dove before it flew off. She’ll love it.

The table we chose turned out to be good for Colin. The band asked for a cowbell assistant and Colin rose to the occasion. They were impressed that he was a drummer, guitarist and vocalist, and by his ability on his first cowbell gig.

It was also fun to see so many of our care team there. Diane and Dawn, Child life and nurse teams were all represented. No Doctors there though. Maybe it was just too nice a day for them…. hummmm…. let’s see, golf, boating or loud rock music…..

At one point Chloe and her friend went to the balloon man. When he asked Chloe what she wanted she just told him to surprise her. Well, fifteen minutes of work later he handed her the most elaborate example of a whale you ever saw. He used so many balloons I thought he’d have to send out for more supplies. He took up so much time that Chloe had to leave and get the group picture taken and come back for her whale.

Wednesday we have to bring her back for yet another sleep study. They are almost sure what she needs to have but need a little more data. I think what we need, more than data, is a magic switch to get the brainstem regenerated and all systems back to normal. We all are more than ready for that to happen, but we are realistic as well. …. but, just in case anyone has one of those magic switches I thought I’d mention our interest….

We brought a lot of tastes for Chloe to try when she’s back home tomorrow. It was funny. Toward the end of the event they opened the food up to anyone for free. Colin was the first one on his feet. Typical teen.

Be well,
Ron

Sept 8, 2010

Second day of school and Chloe says she was more interactive then yesterday. So, I guess that means she did a little better. Colin came home pooped but had his homework book completed and was ready to go. Let’s hope this continues!

Chloe’s nights have been getting worse lately. Nurse E has been having trouble getting her to wake up and breath at some points during the night. Her desats have been going to the low 50s which isn’t good. We’re going to try keeping the pulsox machine right by her head tonight to see if the beeping will wake her enough to take a breath. It looks like there is another machine in her near future. We haven’t heard from the sleep clinic yet though.

There has been a lot of discussion about how to get Chloe to outdoor school. It’s over an hour away from the house and there are no accommodations to have the night nurse there. We thought about transporting her back and forth, but Chloe says that is she can’t stay the week and participate in everything then she’d rather not go. Then she added, “another of life’s disappointments.” This is one more example of the newest kind of problem Chloe faces daily. She really isn’t as good as a few out there might think. Compared to post surgery, day one, yes, I’d say things are pretty good. However, if you’re an 11 year old girl who is used to being part of the regular crowd, this situation is not exactly perfect. Then there’s the breathing part now.

I’m trying to convince Dana she needs to give up another night to a night nurse. It’s not what Chloe wants so she is hanging on to that and trying to accommodate her wishes again. She just tries to do it all. She feeds her, cleans up after everybody, does the housework, sets the teen rules and tries to get them to be followed, takes all the phone calls, answers bill questions, sets appointments, fixes everybody’s problems, and still does two nights of no sleep at all. I told her she’s trying to kill herself.

Today she tried to get the MRI, and other doctor visits set up. Of course, no-one calls back right away. In fact, they will probably call tomorrow when she is .. a-way…

Neither of us has heard anything about our job searches yet either. My next interview is tomorrow so here goes. On average there are eight applications a day going someplace. There seem to be plenty of jobs but there are also thousands of people looking for them. It drives me crazy to be put aside because I’m overqualified. That’s just dumb. My choice, right?!

After working on an Ebay seller I was able to order the calculator that Chloe needs for this year’s math, at a good price. Actually, the one that I got for her is a combination calculator that will be able to be used in future classes and it’s upgradeable. Kind of cool. It’s a TI Nspire touchpad if you are curious. She can even hook it up to the computer.

Poor Ivey was a sick pup today. Dana gave her a bone last night and she thinks it didn’t agree with her. I guess the day was filled with little piles of treasures. Just what is needed, more to do…

No appointments for Chloe this week. We decided to give her a break with the first week of school. We’ll start back up next week. I’m sure Chloe will store up some funny antics for Steve and Beth by then. Steve might even have a new assistant by then for her to pick on right out of the gate.

Thanks again to all of you who follow this blog religiously. Some want me to get on a regular schedule for it but it’s just difficult with all that goes on during different days. There really isn’t a daily reportable schedule. So please bear with me on this.

Be well,
Ron

Sept 4, 2010

Chloe and Dana spent the night at Good Sam’s last night for the second part of the sleep study to determine the course of action for Chloe’s central sleep apnea. The night before she went 40+ seconds without breathing and scared the nurse to the point she almost bagged her. She was starting to turn blue and wasn’t rousing so it’s time to figure out what to do. Up until that night things were not enough to get excited about.

When we got to the hospital last night the tech that was to do the test seemed like a pretty good guy. However, there was one point that he stormed into the room and accused Dana of waking Chloe. It was a trying moment but I guess he realized his actions later and tried to smooth things over. It was a little late for Dana by then. Neither one of them slept, as was evident with them coming home and crashing for five hours.

School starts on Tuesday and you wouldn’t believe how hard Chloe is working to get herself in shape to look “normal.” She is trying to excess as her butt found the floor once and really surprised her. Thankfully she didn’t get hurt although it was a pretty good drop; Too quick for anyone to have stopped it.

We are waiting for Jeremy to arrive. He’ll be spending the night before heading back home to Canada. He’s good energy around everyone so it will be nice to see him.

The swallowing hasn’t changed any, although she is doing a lot of taste testing and trying small swallows. I’d love to have a switch to turn that valve back open but I guess we just have to continue to be patient. The speech therapist still says he is confident she will swallow again.

Dana takes two days a week to be the night nurse but when she got sick on Monday I had a turn. I’m really glad she didn’t just push through it, as she would normally do. She needed the night off! Far too often she lets things fall on her back that don’t need to be there. She can’t be the problem solver for every situation that comes up. There are other hands available and other solutions. She, rightfully so, does what is ultimately best for Chloe though.

Dana had a job interview the other day, at Doernbecher Hospital, in the rehab department. Now I ask you, who would be a better fit in that position? I know, rhetorical question at best. And I’m off to an interview on Thursday for an online newspaper. Maybe we’ll both have an income soon. Then it will be high tech juggling.

A continued thanks to our food helpers. Tim and Kathleen, Barb and Karen have been amazing. They have certainly learned the benefits of giving of themselves. Without them we’d survive, but we can actually have some living moments with them in our world.

Be well,
Ron

Monday, Aug 23, 2010

Gee, you’d think with all our spare time I could get the blog updated more often…

Dana, Chloe and I went to a celebration of life on Saturday. It was for Dana’s second mom while growing up in Albany. We all met at James’ house and it was great to see Dana mix with all her old friends. Chloe also had an old friend there and they spent a lot of time together. At the end of the night Chloe made sure she had Haley’s email address.

When we got home that night, Tim had been there with a surprise meal for us. Those two are just amazing. Wait until we can pay it back. It’s going to be a spread for sure!

We will probably have the new trach this week. We have been waiting but it’s like a lot of things ordered. It will either be wrong when in arrives or it will never get sent. Steve has one at the office we can get if we need it. This time will be another downsize. Hopefully the next time it will be out and sealed. There will be a swallow test soon to see if they think swallowing will be helped by nixing the trach. That’s our hope.

Chloe is walking better each day. She still isn’t ready to go long distance solo yet but she is doing much better. Her goal is to walk the halls of Robert Gray Middle School without looking different. She’s getting close.

On Thursday Dana brought Chloe to get her hair cut and styled. It made her look like a teen! It’s really a good cut and she’s having fun with it. She is also having fun with makeup and fashion. They went to Kohls and bought school cloths. Between her new wardrobe and her new cut I’m afraid the boy factor will be going up by 90% when school starts. It should also help with any problems surrounding the “difference factor” she worries about.

Tomorrow will be another Steve visit. The E-Stim has been used each visit and we think it is helping. “We” being Dana and I… as Chloe doesn’t really like it much. When I tried it I found that there is indeed a point where it goes from prickly to clenching. The clenching is what simulates a swallow.

Jobs searches are in the making for Dana and me. We both need to get back out there in the work environment as soon as possible. The amount of income is not equal to the amount of outgo so it’s time to change that. Dana was completely heartbroken when she found out she didn’t have a job to go back to. It seems that Dr. Duncan’s practice has dwindled and there just isn’t any money to bring Dana back with. It wasn’t just a job for Dana, it was her family. She really has a special place in her life and heart for those people she worked with. So, if you need your teeth worked on please consider his office… or if you hear of a great position needing to be filled, let us know.

Colin is back from Canada now and I’m anxious to hear the many stories he’ll be sharing. He always has great visits up there.

Be well!
Ron