ChloeWatts.com

Monday, June 21, 2010 Colin’s Birthday!

Happy Fifteenth Birthday Colin.  Whew! What a year you’ve had.  As a brother and son you’ve endured more than even I know. You created goodness, smiles and a certain knowing as you sat on the sidelines of family in crisis as we experienced the Chloe year in nightmare form. 

You understood from the get go we would have a happy ending although even you had your moments, your moods and it all happened during an all important first year in high school.  You held no jealousy, no resentment which is tough even for adults.  This was a big year of watching you mature before my eyes.  Growing taller seemed to happen overnight.   And perhaps it actually did.

You’re friends, old and new became very important to you and I noticed this is a year you supported many through their trials as well. 

It was beyond wonderful seeing your singing talents unfold in a huge way through youtubes and of course I smiled knowing you took some suggestions from me of songs that would be a natural for you.  And also , you found your own beat within many genre’s.

You surprised me by taking my birthday gift to you so well.  Not everyone would appreciate their mother cleaning their room in a seven hour extravaganza with any kind of appreciation.  Lets say I’m researching clutter and the whole spaghetti….well..never mind.  You know and that’s what matters.

I appreciated you working harder, refining the school habits as well as your chores at home.  You were split between houses this year and rode with the punch.  I want you to know I missed you then.

I really missed you.

I also appreciated that you didn’t complain, whine or even ask for more of what you weren’t getting at home.  You dove into choir with passion, your one act plays with devotion and the new choir..S.W.A.G with total commitment.  We all loved knowing you were teaching yourself how to play the piano via the use of your computer plus guitar and of course, the drums. 

The video art you created with Chloe as the subject futher fueled your quest to film, create and sing. Wow!  That’s a lot of momentum.  The ‘Chloe’ videos were very inspiring and moving…not just to those who are in the know.  I understand and so must you these video’s were instrumental in Chloe’s healing.  She needed to know, and did how important she is to you.

Ivey appreciated you so much this year too.  She continues to watch over you closely because that’s how life works, Colin.  As you care and love for others so they shall for you as well.  Be selfless, not selfish which is a tough lesson to come to grips with.

As the book we read together so many years ago says…..and the one I discovered while cleaning your room……

I’ll love you forever

I’ll like you for always,

As long as I’m living

my baby you’ll be.

Tis good to be your Mudder , Colin…..

Tuesday, June 15, 2010 = School’s Out

What a day! Today Colin became a Sophomore and Chloe moved to Middle-School. Great job, both of them.

Chloe’s day was extra special. First thing in the morning was graduation of the 5th graders. The place was packed. Little did we know but Chloe had a plan. Go figure… She announced she would use her walker at school and she would talk to some of her friends. The walker was used for the talent show but along with her wheelchair. Today it was solo. And the talking was a first!

The ceremony was really well done and just before her class was announced they played Mr. Black’s podcast with the reading of Chloe’s hospital story. Dry eyes were few and far in-between. It drew quite an applause but it was dwarfed by the applause Chloe got when she and Dana walked across the stage to get her diploma. In her typical fashion, however, Chloe looked straight ahead, across the stage, and not at the audience. She had quite the cheering section with six of us there for her.

At the end of the day the parents lined a path and they clapped the kids out of school and marching on to their next platform of education. Chloe took up the rear and no one left before she appeared. She was a hit today for sure, with all the people that asked her to sign their autograph books from the school.

Chloe beamed a happy light and we all were so proud of her for diving into this endeavor that certainly stretched her comfort zone.

We ended the afternoon with speech therapy and Steve and Sierra. Wendy’s was on the menu along with pop rocks and a few other candied choices. When they went to make the fluff/nutter sandwich I excused myself to avoid an allergy attack.

Tonight Dana will try her best to catch up on her sleep. She has been pulling the overnight shift two nights in a row. That means she doesn’t sleep for two day! Someday she may be able to change that, but for now she’s committed. We just don’t want her to be doing it so long that she IS committed.

When I last saw Chloe today she was tasting anything she could get her hands on. The food that is delivered is such help with this. She loves tasting, and it is essential to her regaining her ability to swallow. So far the easiest thing she swallows is whipped cream in a can. She can fill her mouth and actually swallow some of it. She spits the can out though…

School’s done for this year so we are planning on getting out and enjoying the upcoming good weather. Hopefully you are as well. We’ll probably start with Colin’s birthday on the 21st.

Be well,
Ron

Thursday, June 10, 2010

Colds have been going around this week. First Colin, then Dana, and then Chloe. It was probably a bit more than a cold as everyone had body aches and respiratory gunk going on. Having a trach and a cold is a bit different than just blowing your nose and coughing. Chloe needs to clear her trach by huffing out through the trach or having us suction her. It’s an art form that she has become quiet adept at. But, as she’d say, don’t try this at home…

Tuesday was our therapy day. First is Beth who tortures Chloe with a little typing to start things off. After a couple typing games it’s off to the kitchen to cook something requiring a bit of opening packages, mixing and finally, cooking. Gym is next where she usually rides a swing of some sort while catching moving objects.

Speech is next with Steve and Sierra, and they are becoming quite the tag team. Mikes drive-in was the menu this week. There were tater tots, fries, a burger and strawberry shake. If you’d like a visual of what the end of the session looks like just throw all of them in a blender and put a cup of slime in before blending well. Homework is always interesting when we come home from there. Added to the agenda is a little bit of swallowing. We’ve been doing this for a couple weeks now but each time it gets a little bit easier. She is getting some of it to go to the stomach rather than the windpipe, A much more desirable destination.

Mr. Black, Chloe’s teacher, put together a podcast of his class. On it is a story written by Chloe, followed by one of her favorite songs. If you’d like to hear it just go to: mrblacksclass.podomatic.com, date for June 6. Her part is 19 minutes from the beginning and you can just move the curser ahead to the right time if you want to just hear her story. It is read by two of her good friends. Or you can go to Dana’s facebook page and find it on her wall.

Today we were off to see Chloe’s GP, Dr. Smita T. I love the name, even though I can never remember how to spell it. We were a bit concerned since the secretions have been pretty colorful lately. To boot we also have a night nurse who has come down with a staff infection on her leg. No chance taking here, we want to know right up front if we need to fight something. Her lungs sounded very clear and we were able to get a good sample to culture. They ruled out another x-ray, thank you God. She has had way too many of those already.

Getting to the doctor’s office was delayed a little when we loaded into the car and it wouldn’t start. I threw the charger on it and in a few minutes we were rolling. Not really sure what was going on but it charged so we go there and back again. The battery is probably at the end of its life. We’ll check it ASAP. When we backed into the driveway Dana noticed one of the school crossing guards who looked familiar. In a second or two she determined it was Jethro. So I got out, hollered hello Jethro, and told him I liked his youtube. Chloe had sent it to me a few months ago because I always tease her about a guy named Jethro must wear bib overalls and wear a straw hat. She beat me up then, and, if the door hadn’t been shut, would have beat me up again today. It did get her out of her funk for the afternoon though. She’s fun.

We are looking forward to the nice weekend. We’ll try to keep cool for the nights. Hope all of you can also.

Be well,
Ron

Monday, June 7th, 2010

Usually the blog has been held off until after the Tuesday therapy sessions but yesterday deserves its own page. With absolutely no push from us, Chloe contacted her good friend, Claire, a couple weeks ago, to see if she wanted to play a duet on the piano for the 5th grade talent show. Claire jumped at the chance, so she and Chloe practiced when they could.

Yesterday was the big day. Chloe asked Dana and me to be at the school by 12:30, assuring nothing would be delayed. The show wasn’t to go on until 12:45 but we were soon to find out that she was way too excited to have anything go wrong. She also wanted to make sure her walker was there for her.

Dana and I waited outside of her classroom and when the door opened Chloe was the first one out. Her nurse, Carrie, was with her but Chloe was fixated on Dana. Now I know Carrie cares for Chloe but I did notice what she does that drives Chloe nuts. “Sweetie” is used WAY too much and she needs to learn that nine million questions and suggestions don’t fly with our very well thinking Chloe. Only one more week of class so I guess everyone will make it okay.

Carrie was trying to get Chloe to walk from the classroom to the cafeteria, and, and…. Chloe finally just smirked, shook her head, and threw her hands up, turned her wheelchair around and motioned for us to follow her.

She flew down the hallway, went past the two open doors and stopped at the stage door. She was scheduled to be third in the performance lineup… but there was a glitch…. She didn’t think Claire was in school. That meant it was going to be Mama and her playing. Dana wanted some practice time before the kids showed up so she helped Chloe climb the stairs to the stage. Chloe doesn’t need anywhere near as much help as in the past. It was great to see.

Once on stage Carrie tried to talk Chloe into using the piano that was on the floor rather than the one on stage. Chloe knows what Chloe wants and it wasn’t to be seen as a kid who couldn’t do things for herself. It was a performance, and performers belong on stage! In fact, she intended to stay behind the curtain for the entire show.

After I moved the piano out a ways, she and Dana went over the piece she was to play. It was funny, but Dana was more nervous than Chloe about all this. One other time she and Chloe were on stage together to sing for one of these. Dana does get more stage fright than either Chloe or Colin.

As the kids poured into the cafeteria, there was Claire! Yea! Dana was very happy to see her and to confirm that she would be performing with Chloe. That also meant that we would be able to film the performance easier. It looked like I’d be using two cameras at the same time.

Show time! Chloe and Claire were announced and they walked the width of the stage to the piano. This was the first time anyone at school had seen Chloe walk. It was great. They did “Heart and Soul” very well and the kids gave them a tremendous applause. Then they took the walk back across stage. Chloe was beaming. Dana was weepy. I was very happy for both of them and very proud of Chloe for putting herself out there, saying, I’m back!

When we were saying goodbye to Chloe after the performance, Dana got very close to her and said, “Do you realize just six months ago you could barely open your eyes.” It’s true. Chloe has come a long way. It’s not to where we want her yet but it sure is a miracle what she has accomplished. Understanding the excitement she is stirring up is easy for Dana and me. For Chloe, it’s not. ‘What’s all the fuss’ comes from her much more easily.

Be well,
Ron
I’m having trouble getting the video to download so please be patient. I may have to put it on FB in “friends only” until I can figure out how to reduce it enough for this file. If you have any ideas I’m all ears.

Memorial Day 2010

Something just hit me today. Most of you who have been providing meals think you are just helping out Dana, Colin and, sometimes, me. However, the reality is that Chloe has been taste testing every meal you have brought to the house. And she has loved every one of them. She can’t swallow any of it yet but she does get a plateful of food and sits down with her fork, suction machine and spit cup. It’s quite the site and makes a very unique display of ABC food. Colin gets grossed out… that’s just a side benefit of it all according to Chloe.

It’s acknowledged often here that the food help is so appreciated. One reason I feel it necessary to thank you publicly is that when you arrive in person it is often during a time that Dana is just going 100 MPH or is completely wiped out. Yesterday for instance… She had a few hours break and decided all she wanted to do was separate herself from the world. I stayed home in order to help with that. It almost worked, with just one visit and no phone calls. She hopes she wasn’t too bad to the one visitor, but that’s always a concern of hers.

This weekend didn’t pan out just the way we planned but it wasn’t a total washout. Chloe did have her friend over to practice the duet they will be doing for the talent show. And today, Dana and Chloe went to Trader Joes and Albertson’s for quite a bit of walking and some shopping. Chloe had an idea of some deserts she wants to make so they got the ingredients. For Chloe to want to go out in public it’s big, very big.

Unfortunately, Dana is getting sick today, sore throat, etc., so she asked me to help with the CremBrule (Sp?). Oh shucks, I had to help Chloe… We had a ball. It was much more fun than working on the deck. She did a lot of the work. All I had to do was the lifting and pouring. She separated the egg yokes, even the double she found. She added the cream and heated and stirred it until it was ready to pour into the egg yolks that were on the mixer. What she hadn’t factored in was the wait time before eating… Guess it will be breakfast or lunch tomorrow.

With Dana sick I’m on night duty tonight. Chloe was pretty bummed about that as she really looks forward to having Dana spend the night with her. She was quick to point out it wasn’t about me… Glad to hear I’m still in her favor. However, with Dana sick, Dana didn’t really want to be laying there breathing on Chloe and getting her sick. So, Kitty is inside and has food and water, and I’m available to be here overnight. It was a no brainer.

Chloe is talking more and more now. It’s so cool to have her say hello to me when I come in now. I’m so used to “the voice” that it’s a pleasure to hear. And then we have full conversations together. She spoke to me with the Pasi-Muir valve off and just her, somewhat, normal nose on. Then Dana told me she is even talking with her cuff inflated. This is big as it means her vocal cord is working better and better. The left may even come into play soon. And one more thing… she had a very successful swallow tonight with some sherbert. When Dana told me that, I said to Chloe “you may just get your ‘before school starts’ wish.” She said, “Before Colin’s Birthday. We’ll see…

Tomorrow we will be back at Doernbecher’s for OT with Beth. Steve is on vacation so we won’t have that pleasure, but Beth does a great job motivating Chloe to get going, especially when we enter the gym. I think Chloe is more starved for working out in the gym than the two of us are. God knows we all need it!

Time to get the boat ready… you’ve seen the weather report I’m sure. When you come for a visit we won’t be hard to find. We’re the house with the arc in the back yard.

Be well,
Ron

Tuesday, May 25, 2010

It’s Tuesday night and time for a new blog entry about Chloe and her surrounding life. And what a life it’s proving to be.

She and Dana had a highlight with the finale’ of Grey’s Anatomy. Funny they should be so wrapped up in medical and cooking shows. Who knows what that may bring. Chloe is in direct control of that answer.

The week has been the typical week of many different moods and feelings. We are still quite convinced that a good nights’ rest equals a good day full of activity. When we feel we are getting that balance something always seems to jump in and rock our boat. She tends to have the same time frame during the night. 3 am is our nemesis. She will start dropping her stats, need suctioning and have to go to the can. Then she waits a few hours to get back to sleep.

The G-Tube is getting close to its expiration date so we will be in for that to get changed soon. The last trach change went well and we are expecting this to go just fine as well. Tomorrow we get to see Dr. Steve again and talk about how well she is doing and what to expect in the near future. We are trying to convince Chloe to put her valve on and speak to Dr. Steve right out of the box. It will blow his mind.

Today we had OT and Speech. Tuesdays tend to be fun days for Chloe, however, today she was told she would have to talk to Beth during OT. She didn’t want to do that so pulled some attitude on us. It lasted for a while but Beth is good at getting her out of her funk. And, then, at the end of the OT session, Beth brought her in to cook a quick bake brownie. It was the perfect thing to bring Ms. C around. She doused it with frosting and then honey. She didn’t even wait for Steve to show up before she dove in. This is the next best thing to being able to swallow. At least she can get a good taste.

When Carrie showed up in the room she told Chloe there was a surprise awaiting her. It was more than the KFC they picked up, it was one of her former Speech Therapists from Legacy, “Pettel.” She is going to be Steve’s new intern. Everyone was very excited to see her, and she was amazed at the progress Chloe has made since she last saw her two months ago.

Chloe took a while to wake up during this session but when she did it was all or nothing at all. The brownie was completely gone and so was the biscuit and honey by the time we left. Steve asked what she wanted next time, in two weeks. She said, a Mike’s Drive-In strawberry shake, fries, tater tots and ranch dressing. It just so happens Mike’s is in between the two hospitals Steve is at, so he has their phone on his speed dial and will place the order for the June visit. Things went so well during the end of our time that we actually spent an extra half hour in the room. Traffic was interesting leaving the hill at 5:15 though!

Tomorrow night we are going to a party hosted by Chloe’s photographer. It will be a night of walking in her shoes, thought photographs, of her trip to the depths of Africa. This will be right down Chloe’s alley. It should be a great night and a way to help pay back all the generosity we have seen from these organizations. It’s a fundraiser for someone else for their cause.

Rose festival starts this weekend and I would really like to talk Chloe into doing something during that time. We also have to go to the Zoo for the special members tour of the dinosaurs. It should be the perfect place for her to walk around. We’ll have the W/C there for the worst part of the walk though. They will probably provide cart service if we ask for it.

Colin is doing a solo at his concerts Thursday and Friday at Wilson High School. I believe they start at 7 pm, but you can check with us for the exact time if you’d like to go. Not sure which night we will be there as of now but do plan on attending one night, at least.

When we got home tonight we found Tim and Kathleen had made some of the best burritos you could eat. They even had sour cream… of course I have to suffer being the only one who likes sour cream… It was such a treat as I had to run back home to do some work while Dana had to jump right back into the throws of Nurse Mama. That’s a job for an octopus mom. It seems like eight arms are what is needed to do it right. When we are both there for bedtime it’s full time for both of us to get everything set up, hooked up, brushed up, and bedded down. Even with Chloe being able to help at a lot of it we find there is still a ton left to do. We are so looking forward to the day she loses that trach and can start living a normal life again. She deserves it most of all but we certainly will welcome it back.

It still amazes me at the amount of love and support you all provide. Without that we would probably be looking at installing rubber walls.

Enjoy the upcoming weekend. We will be Bar-B-Qing on the renovated deck. I’m sure Chloe will be in seventh heaven with all the tastes available. Sounds like it will be pretty acceptable weather, although we all would love to see some sun and warmth.

Be well,
Ron

Wed, May 19, 2010

Tuesdays always seem to be the day Chloe looks forward to. She gets to go to the gym with Beth and she gets to taste food with Steve. Both offer good vibes and the attitude of hope, something Chloe desperately needs.

The downpours stopped just in time to get her loaded into the car and get off to Dornbechers. When we pulled up to the front circle, there sat the Weiner Mobile. Dana and I immediately got a little excited. Chloe wouldn’t have anything to do with it and even refused the free picture they were offering. It’s partly the generation gap thing but then it’s also the no poverattsi thing. She just doesn’t like being in public yet. She even covers her trach with a scarf when we are out.

Mama makes her use her walker more and more now. So from the car to the elevator to the third… which is actually the seventh…. floor to the lobby, Chloe didn’t take a break. We checked in but the guy forgot to page Beth so we started 10 minutes late when Beth finally came out to see why we weren’t here. She knows we are really close to on time, all the time.

Touch-typing isn’t Ms. C’s favorite thing but that’s what we are working on. As many of us in the beginning didn’t see the need, she is there as well. There are some games she can play on the computer that teach typing so we will be doing that on a regular basis. Once again I explained how necessary it is for her to learn this and that, once learned, she will probably challenge herself to type even faster.

Next was finger painting on a paper taped to the wall. This helps with coordination and also gets her messy… something she likes. Then, Finally, it was off to the, now, un-crowded gym. She did well on the rock wall, getting up about three feet, and then tried the ladder to the slide. She didn’t make it this week but she’ll try again next. Then it was off to the swing. It’s just too much fun in there for her to have a bad time.

Steve, and Carrie, met us in the lobby about 10 minutes early and announced he had a culinary delight awaiting his star. It was pretty funny when I caught him by asking “Twinkies.” It turns out I was right on one of the courses. The rest was pretty good as well. She tasted Mexican food, something that doesn’t arrive at the door often, and fries with katchup, her staple.

The Pasi-Muir valve stayed on most of the hour and Chloe spoke to us in pretty good sentences. It’s still “the voice” but it’s mostly recognizable. Some of the words don’t come out as planned since the tongue still has a ways to go before it can fully carve the words out, but it’s coming along nicely.

Now it was time to try some simple swallowing. First came some cold soda. A small sip, tilt your head to the right side, the one that is starting to work, and force a swallow. Chloe said it was minimally successful. We tried thinned out pudding and ice pops next. All were a little successful and are something we are now going to try at home under complete supervision. Some gets aspirated each time but she can cough it up when it happens.

When I was speaking with Chloe the other day about the trach, she asked me “When will it come out.” No-one knows for sure was my answer, but what would you consider to be a reasonable time based on your progress so far? After getting “today” out of the way, she decided it would be great to have it out by the next holiday. “Which one?” “Halloween.” So we took the calendar out and marked October 31st, as “the trach is gone.” She did the same on her Ipod. Then she told Steve yesterday that she didn’t want it for next year at school. His reply? “I don’t see you having that thing next year at school.” He repeated it twice and later Chloe still needed to be told what he said. So that’s what we are shooting for!

Backing up in the timeline now… There is a talent show at the school. Chloe has always done a song there but, of course, she can’t this time. So she invited her friend Clair to do a duet of “Heart and Soul” on the piano! Inventive is what she is. Let’s find a way to participate anyway. Colin will have some competition for the piano for a while now.

Speaking of Colin, he has a choir concert on Thursday and Friday at Wilson High School. I’m not sure of the times yet but many have been at 7 pm before. They really had a good choir program there if you’d like to check it out. It sure beats their football team…

We made it to church again on Sunday. As I was in the door first I made sure everyone knew that Chloe is really not into public appearances and to please just greet her as they would anyone else, not to dote. I thought we were out of the woods until the very end when someone got to she and Dana, when I wasn’t around, and spent way too much time with them. It’s hard to ask for less contact when so much love is poured our way, but it did set the tone for Chloe the rest of the mid-day. On the other side of the room I was receiving unsolicited advise on what we should be giving her in order for her to get well. Again, well meant, but difficult for me to accept after being through as much medical trauma as I’ve seen. The old snake oil stuff I can do without, even though I’m very open to hearing about new things. Like jokes, presentation is everything.

It’s too sunny out there right now to be here on the computer so I’ll be sending out another update soon. In the mean time I hope you all are having a wonderful spring, haven’t had to plant your gardens as many times as I have and all stay well.

Blessings,
Ron

Update to Tuesday 5/11/2010

As promised, here’s the update from today’s doctor visit.

OT went tremendously well. Beth couldn’t keep up with Chloe as she was on the go from the moment she entered the door. She climbed the ladder to the slide (with help), tried the rock wall, was on the swing and in the cocoon hammock and finished by painting shaving cream pictures on the mirror.

Next we were off to see Steve about the swallow test. This is a test that is done with a constant x-ray of her mouth, neck and throat. It shows the mechanics of swallowing. They tried with pudding, juice and then a paste pudding. All three showed marked improvement of the tongue. She was able to push the food to the back of her throat and then was able to trigger the start of a swallow. This is so much more than she was able to do last test. However, it does mean we have more work ahead of us before she can eat. The test never produced a full swallow and we had to suction the material out.

Chloe came home completely bummed out, even though this IS progress and Steve said, once again, he has no doubt she will eat again. When we got home Dana put her in the tub to help calm her. Then we hooked her up to the feeds and went about the job of cheering her up. Colin and I were pretty successful with blowing up gloves and driving Ivey crazy. Then we put the gloves over our heads and that really set Ivey off. Chloe couldn’t hold it back.

Even though it was a short period of laughter by her it was a start. With all the movement she did today I believe her night will go well. We came home with homework to help her attain her goal. Now it’s just a matter of getting her to be a little more patient.

Be well,
Ron

Tuesday, May 11, 2010

As I mentioned earlier, Chloe has been selected for the Hero’s Award, one of only 25 in Oregon. This means her picture will be on the Hero’s wall that will tour the state for a year. Well, Sunday we went to the photo shoot with photographer Joni Kabana and her son Aaron, and it was a wonderful experience.

The whole family was invited to participate, so Dana, Colin, Chloe and I all dressed ready to be shot. The old warehouse district is filled with some amazing history and this building was no exception. The studio is in an old paper bag factory with a freight elevator the likes of which you only see in old movies anymore. Two red doors opened vertically to expose a cage door inside. You had to stop it at the right floor by yourself.

Chloe had to climb about 10 stairs to get to the elevator and then used her walker in the halls. The studio is one large room with props, flash screens and music. Once Joni found out that Chloe was an MJ fan all the lights were on! She too has been a fan all her life and she had plenty of music to prove it.

Chloe sat in a chair in the middle of the room and by the end of the half hour talk session most everyone was seated in a circle. Colin was in the spotlight for his youtube as Joni wants to get into that part of photography as well. And Aaron is a fine young bass player who loved the fact that we are a musical family. He and I were able to speak about his possibilities for continuing music as a career or avocation.

When it was time for the shoot we were all happily relaxed. First Dana and Chloe were front and center. It was fun from frame one. They posed, chair danced, hugged and laughed. I was up next and she and I are always silly together. When bro Colin was called into action he shined. Some of their pictures together were just the best! Finally it was the whole family’s time to get in the shot. The music came up and we were encouraged to move with the MJ tunes. My photographer friend, David Rolin, would hav been impressed. All in all it was a great experience and Chloe got lots of PT with all the long halls and stairs. She slept well that night.

We also got the family to church for the first time in what seems like years. Carl Anthony was singing and doing some of the service. We like him a lot and he took a shine to Chloe the last time they were together. He even sang a special song for her during the service. Unfortunately Chloe doesn’t like the limelight so she made her exit as soon as possible to avoid all the fuss. I wish she and Carl could have hooked up for a minute but it wasn’t to be.

To complete Mother’s Day, Dana and I were able to sneak away for three hours and go to her favorite Mexican restaurant, Woo Song and Larry’s on the river. On the phone they said they were packed but when we got there the bulk of the crowd had disbursed and we had our table by the fireplace. Finishing up with Deep Fried Ice Cream is the way to do it.

Today is a big day. At 2 pm we will be over at Dornbecker’s for OT. But, at 3:30 we will be with Steve for a SWALLOW TEST! We are all eagerly anticipating the perfect results, showing that Chloe’s swallow has, indeed, come back. So, whatever your beliefs or rituals, now is the time to bring them out of your bag of tricks and focus on this result. I’ll be reporting the findings as soon as I get them.

We have an amazing team of support and have been blessed by the love, help and meals that have come to save Dana the anxiety of having to figure out what to cook and when to try to fit cooking in to the schedule. Some of the portions have been over zealous (wow!) but I guess that’s what freezers and friends are for. It really is a huge help. Thank you!

Be well,
Ron

Tuesday, May 4, 2010

Time sure flies when you’re having fun… or not. It’s a fulltime job trying to keep Chloe happy. Just try and imagine, not being able to eat, drink, swallow, produce tears, walk without help, or having your privacy invaded in your own room, or having little kids stare at you because you have a tube sticking out of your neck, or having to leave the room to be suctioned because it’s become too embarrassing to have it done in front of anyone. It’s beyond my capacity to imagine half of this. Yet, Chloe is capable of laughing and having a good time. How, is the main question.

We have our talks with her about being nicer to people, mainly the nurses. But, it’s hard to convince someone when you understand where they are coming from. We know they are all just doing a job and trying to make things better for her. However, it’s hard for her to see anything other than people just bugging her. Even the nights that Dana takes the shift, it’s hard on her. She just wants to be left alone. The only problem with that is the fact that it is possible she may occlude during the night and not be awake enough to clear it. We aren’t ready to take a risk like that.

Last night was Dana’s shift and it started out okay. By 2 am things went down hill. The pulse ox machine wouldn’t stop beeping. This shows the amount of oxygen she is getting in her system. When it drops below a certain percentage the machine beeps. Most of the time it takes a deep breath to bring things back, or to reposition her foot so that the wire straightens out. None of the tricks were working last night, so the sleep was, once again, severely limited.

The day before, her school nurse called in sick so I went to class with her. The day went very well and we actually got quite a bit of work done together. She and I really work well together for some reason. You’ll hear no questions from me as to why. Whatever works, works. My nights with her also work very well. She sleeps and I get some computer work and reading done.

Dana was trashed when I got there today to bring them to the hospital. When I see her like that I can’t help but wonder just how much she can stand. Marathoners don’t have a clue. Other than caregivers who do this type of thing, no-one else can have a clue. If you see her for a few hours or a few minutes you may think, what’s the big deal. Take a couple week shift and you’ll see. It’s a major drain on the system when you pour your heart and sole into giving care and you can’t care for yourself. Our gym has lost its’ pool so we cancelled our membership. Now I’m in the market for a new place to try and get us to. We need a good pool for laps, a hot tub, sauna, nautilus machines and free weights. Classes would be a treat also. Then all we would need is a little spare time and someone competent to watch Chloe, or convince her to come with us and have someone with her. Sure, why not ask for the world?

Today, when we picked Chloe up at school, she was pretty mopey. So as I was getting her buckled up I handed her a new Itouch. Her other one shut down and it’s going to take too long to see if someone at Apple will replace it, so I decided on the upgraded version that has voice capability. She lit up. It’s her main source of communication and her musical buddy.

When we got to the hospital Dana went directly to Starbucks, don’t pass go, for her free coffee. Not that she needed it or anything… Then we went upstairs to see who our OT therapist would be. Beth showed up and brought us to a small exam room. Chloe was very standoffish and wouldn’t agree to anything. Beth was good though and I kept Chloe honest with my comments. Yup, I got hit a few times. It’s part of the OT treatment.

Beth had her take a typing test and then asked her if she’d like to see the gym. No was the standard answer and I said yes. So we went to the gym. Once inside, Chloe saw the multitude of things to do and started to perk up. Beth asked if she’d like to go down the slide and Chloe nodded yes. Then truth set in when she was two steps up the ladder and didn’t know which way to go. She stood there a few minutes and then decided this wasn’t the day to finish that trip. So we came down and Dana found the large padded barrel. That was an instant hit for Chloe. Then we had a flat swing. Then we had the huge ball, and the parallel bars and… We went 10 minutes past the scheduled time and Chloe was having a ball and Beth became a hit. We are all looking forward to next Tuesday.

Next was “tasting with Steve and Carrie.” KFC was on the menu today and Chloe knew it in advance. You should have seen her wheel herself toward the speech office. She was flying! As soon as she got in there she was presented the meal of two drumsticks, mashed potatoes and gravy and another side that escapes me right now. She took a huge bite out of the drumstick and smiled. The P. Mears valve was put in place with her cuff down. This lets her breathe in through the trach and out through her nose and mouth. She lasted over 30 minutes with no problems. Then it was talk time.

She said “yo, Yo Mama, What-Up, Hello Jenny” and she finished the second part of our stick from the Muppets. I go, “Ba da ba dup” and she goes “boop boo ba do bup.” Well, it was reactionary when I started it and she started out with a singinging “boop boo ba do bup.” It surprised us all, but most of all, her. She didn’t get it perfect but it was definitely a singing pitch and inflection. At the end of our session Steve took more pictures of the chewed food and ravaged drumsticks so that he can email it to Jenny, the speech therapist at Emanuel that we grew a mutual closeness with.

By the time we left today, Chloe was pooped and she said so. It was a great workout. Now we have to figure out how to keep it going.

We are back to a nurse night tonight so we are hoping the pulse ox machine will behave and Chloe will sleep like a baby.

Colin was recommended, by his voice instructor at school, to participate in the European Tour next year. It’s a stretch to think he will be able to pull it off but it’s got him thinking. We told him he’d have to work like no tomorrow all summer if he expected to get the money to go. We don’t have a figure yet, but by looking at the schedule, it won’t be cheap. This is an ideal opportunity for Colin start honing his money-making skills. I guess we’ll see how much he wants it.

Now it is my hope that everyone will sleep well tonight. God knows we all need it.

Be well,
Ron