ChloeWatts.com

Tuesday, July 22nd: Blog #1

Chloe had her follow-up doctor’s appointment today and, as expected, she was given rave reviews for her healing. And she was disappointed by the, just as expected, news that the tube needs to stay in so that she can continue her improvement. Not only does it provide her with her daily caloric needs but it also provides all the vitamin and mineral needs to sustain her and give her energy.

She has made some weight gain, up eight pounds from the first weigh in at the hospital. However, at just under 47 lbs, she is still not even on the chart for weight per her height and age. The hope is that we get everything under control and have a good enough, steady, improvement that she can start school tube free.

Disappointment was evident on her face and I sure felt sorry for her. She was pretty run down by the time the 2 pm appointment rolled around that she didn’t have a whole lot of fight to complain about the tube. She thought she heard the tube would not be replaced if it came out. That’s why we adults need to be ever so present at the doctor meetings. My advise to anyone going through a similar situation is that, if your memory isn’t photographic, you should write down as many instructions as possible to avoid confusion, at best, or a disaster, at worst.

After the doctor’s appointment, that Dana, Ron and Lee were at with Chloe, we went back to Dana and Chloe’s home. Chloe had some quality Ivey time and read her mail, which is starting to look like North Pole Mail. She is one very popular lil’ girl.

Her visit with her Grandmother, Dad and Ramona will last through Thursday. Friday morning she will be back home with Dana. Her room is ready and cool thanks to Heather’s air-conditioned. She has been having a great time over at her dad’s place but I think she is getting a little over tired from all her shananagans. I guess a lot of water has been spilled in that house recently. I’m glad she is feeling a little more normal being able to play and laugh… and eat!

We are a long way from ally-ally-in-come-free, so I am hoping you will all stay with us on this upward hike. What took place the weekend of the 12^th was nothing less than a miracle, a miracle provided by all of your prayers.

Blessings,

Dad and Grandma’s Blog. July 21, 2008

In talking with Chloe about the blog this evening, she told us “There is no bad news to report tonight!”  When Grandma got up this morning, Chloe was eating breakfast and ready to get on with the day.

Grandma took Colin and Chloe to the Goodwill today for some summer wear, considering she will be growing out of everything else she already wears, and she got some really cute stuff!  Colin didn’t find any clothes, but he did come out with a movie, The Sims pc game and Mind Trap II.  We’ll have to try again, cause his shorts are a bit snug.

Chloe is going to see the pediatrician tomorrow, and still hoping like crazy the feeding tube stays behind…gotta see what the doctor says.  She’s even trying to con Grandma into taking it out before they get to the doctors office tomorrow.  Her reasoning…”Dr Shardy said it could stay out if it happened to come out before the appoitment!”  The little bugger is back and in full form.

Nothing more to report here.  Thanks again for your support.

David & Grandma

Dad and Grandma’s Blog. July 20, 2008

Looks like we’re on a roll! Chloe had another great day. Although mornings seem to start out a little queezy, as the nights used to bring on the fevers, she works through breakfast, keeps it down, and then gets on with the rest of her day. She carries her feed bag in her backpack, rather than rolling the pole with her everywhere…pretty much goes where she wants, when she wants. And, she’s more conscientious about drinking her water…she doesn’t want another UTI.

Today we had visits from Aunt Louise, cousin Melissa, cousin Austin (baby), Grandpa Nick and cousin Johnny. Chloe got to hold the baby, she ate a great lunch, dinner and snacks.

Colin and I took a ride on the motorcycle today to pick up some of Chloe’s meds at Rite Aid in Beaverton; he also thought it was a good idea to ambush Dad a couple times with the soaker gun he has…course, Dad got his revenge. I’m sure we’ll be making more attempts in the future, with similar results.

All in all, things are looking great! Chloe will see her pediatrician on Tuesday, and she’s really hoping the feed bag and its accessories will be going bye-bye…but that’ll be up to the doctor.

Thanks and have a great day….rest assured, we are.

Dad & Grandma

The Grandma Blog. July 19, 2008

Today was another great day for Chloe. We were given permission yesterday to cut the neurontin to once a day so between the doctor, Dana, and I, we decided the one to omit was the morning dose. So today was the beginning of the new regimen. I had a moment of concern this am when Chloe got up and was eating her cereal. She gave me that look and then headed for the bathroom to get rid of what she had just eaten. I thought about going back to the regular doses, but decided to just watch her and see what happened. The tube stayed down so we were ahead in that respect. When she returned to the table I told her she didn’t have to finish her cereal right away and maybe letting her tummy settle might be good. She said no I want to eat. So I let her call the shots and she finished her breakfast without any more problems. Once again she showed me her grit and determination to get well. The second breakfast stayed down and we had no more problems. I promised Dana that when I was in charge I would only call her if we had a problem. Otherwise she was to relax and recharge. This episode turned out not to be a problem.

Today was Ramona’s birthday so we went to the store and got a cake mix and the stuff to decorate a cake. That was our early day project. Chocolate cake, chocolate frosting and pink silk flowers. Chloe and Colin were my official tasters and they each got to clean off a beater; double dipped in frosting!!!

After making the cake, we watched a movie on TV (Disney – “Monkey Trouble”). I love having grandkids. They are a great excuse to watch the cute movies!!! Chloe spent a lot of time yesterday and today holding Fire Bolt, and she even did his housekeeping chores.

After Dad and Ramona got home from work, we all headed out to The Reptile House in Tigard to visit Tim and crew, and to get a look at the Gilla Monster she had heard so much about…”He looks cute!” was Chloe’s comment about the lizard. She got a chance to talk with Tim, who also kept a watch on the blog to see how she had been doing. He was glad to see she is doing well and let her know he’d see her next time.

We all had a great dinner and then, after singing a rousing round of “Happy Birthday” to Ramona, we all dug into some cake!! Very moist and tasty!! Just having Chloe home and getting better every day was present enough for Ramona and family! The sparkle is back in Chloe’s eyes and she is thriving on good food and lots of love and kisses.

Thanks again for your thoughts and prayers…be back tomorrow with more good news.

Grandma Lee

Grandma’s Blog for July 18, 2008

Thanks Ron for putting in all of the details of the day.  That gives grandma a chance to just be grandma for a few words.  First I would like to thank all of the care givers and friends who have been praying for my precious granddaughter.  It was harder than words can say to sit in Denver and not rush out here to be with her and her mom, dad and brother during this ordeal.  But, I decided I could do Chloe and everyone more good if I were here when she got out of the hospital to give her some grandma magic and give mom a little time to recharge her batteries.  I have watched Chloe turn this corner and she is showing her old spirit every day.  ; She’s requested all of the comfort foods she knows only Grandma knows the secrets to.  She’s received grandma’s love in just holding and cuddling, and now she is showing me her impish little self.  Whoever gave her all of  those syringes is on the top of my list…she’s decided she has had enough of them pointed in her direction and now is getting even with everyone else around her…the little ambusher!  That’s my girl!  She is eating like a champ, frisky as a colt and is doing our hearts good.  If love could heal, she would have been well long ago.  And, I am so thankful that I am here to see her getting back to her old self.  When I return to Denver, I will leave my heart here for Chloe, and Her Daddy, and Mama, and brother Colin.  I know she will be well.  She has thousands of people praying for her and I thank you all from the bottom of my heart.

Love, 

Grandma Lee

Friday Morning, July 18th:

Yea, Yea, I know, I said I was taking a couple days off from writing.  But this morning was SOOO exciting I just had to slip a short one in for you. 

Chloe had a Doctor’s appointment at 11 am today.  Dana and I met Lee, Colin and Chloe at the office.  First up were vitals.  Good temp, good BP, let’s check the weight.  On the scale Chloe tipped it at 46.5 pounds!  This is a high for her.  49 ½ inches tall.  This was great news for us. 

Then Dr. Olsen visited with us and said things were looking good and that we would probably just schedule for three months out for the next visit and MRI.  Great news.  We had some questions and all the answers were encouraging.  We can keep her feeds at 65 ml because she is eating by herself more now.  We can wean her off of the pain meds, bringing them down to one dose a day vs. two.  Then Dr. O. said let’s pull the PIC line.  That scared Chloe a little but she consented. 

Next it was Chloe’s turn to quiz the doctor.  “If my immune system is doing well…. Can I hold my dragon?”  The answer, “of course.”  Chloe about hit the ceiling with a giant yippee! 

The IV line was to be pulled so the nurse came in to do the procedure.  She used tape dissolver but the tape still pulls a bit.  Chloe was wincing, but when the nurse said “it’s a good thing you don’t have hairy arms,” Chloe piped up, “That’s because the last IV nurse pulled them all off!”  We about peed ourselves. 

Dr. Swamp Fox and Dr. Judy were also there today so we had some good visits with them.  Chloe told S.F. nana nana boo boo, I don’t have to keep my PIC line a month.  She also made a date with Dr. Judy to go horseback riding.  Judy is scared to death of horses but consented to go with her. 

After the visit we hit the food fair the hospital was putting on.  It seemed like every care giver we have had was there to greet Chloe.  Even our favorite cleaning lady was there with her husband and granddaughter, Shirley.  Chloe, Colin and Lee all had snow cones the size of houses.  Then we all had a free lunch on the hospital.  It’s about time something came free from there….. 

I’m sure Dave will have a great blog for the afternoon as well.  These are some great days for Chloe.  We know there is a long road out there but we are loving the successes of late, I’m sure afforded us by all your prayers and Chloe’s strengths. 

Blessings,

Ron

Daddy’s Blog for July 17th, 2008

Today was a great day! Chloe, Colin and Grandma arrived at our house today around noon. As I reached in to help her out of the car, her little devil horns were ready cause Dad got a shot of water from a hidden syringe. Apparently, I wasn’t the first victim of the day, because Grandma had evidence of an earlier ambush.

Once Chloe stopped giggling over her successful mission, she was in the house and looking to catch a glimpse of her little “Firebolt” (her bearded dragon) and explained to him why she can’t pick him up just yet. He cocked his head to the side and listened intently…or was hoping she’d drop crickets from the sky. Not today little dragon! Chloe decided she was interested in going to Mike’s Drive-In for her favorite treat!! A Strawberry shake and Mike’s fries for the dippin! Everyone at the Sellwood store was excited to see Chloe up and around, even Ingrids daughters were there and enjoyed her company. Chloe dug into her fries and dipped out/drank well over two-thirds of her strawberry shake! Her eyes rolled backwards, and the word “Yummy!” escaped her lips! Of course, she also had to sample Ramona’s chicken strips and Grandma’s halibut! Colin devoured his cheeseburger (no sauce p lease) and fries, as only Colin can while attempting to fill one of the hollow legs!

She was a bit tired when we arrived home….probably from having to digest all that yummy food, so she snuggled into the couch and read Harry Potter and occasionally looked up to see parts of Colin’s movie. Ramona and I started a shopping list on requests for favorite foods and off to town we went to get the goodies! Chloe really wanted a ping-pong table, so we found a good substitute, a tennis table set-up and turned the dining room table into a mini ping-pong table! Since Firebolt sits in the dining room, near one end of the table, I’m sure he’ll be having a good time dodging all the mis-fires! It’s amazing how much fun two kids can have with a bucket of ping-pong balls, two paddles and Ramona’s imagination. Our living room is now a ping-pong arcade with mason jars, shoe boxes, baskets and various containers – each with their own point value – courtesy of Colin and Chloe’s negotiating skills.

While barbequing dinner, Dad was ambushed again, only with a little larger dispenser and a quick running little boy!! It wasn’t long before everyone, including little innocent Chloe, was in the sights of Dads water bottle…needless to say, we were all soaked and laughing our heads off. Water fights are a summer tradition at Dads house too…and one can break out at any moment of the day. Refreshing!

Chloe had an amazing appetite at dinner; eating a third of a pork steak, a bowl of ceasar salad and some watermelon…obviously the best part! After supper out on the patio, we settled in for some much needed cuddle time. Grandma, Ramona and Dad played “pass the Chloe” and she was more than obliged. Colin decided to pass on the cuddles and got in a little more tv time. After dispensing the meds, and nightly rituals, it was off to bed for the little ones. Dad and Grandma will make sure the middle of the night feedings are taken care of.

It’s been difficult not being able to spend as much time with Colin and Chloe as we have wanted. Just having their noise and presence in the house together again is a real treat. With Grandma and nurse Chloe teaching us to administer the meds, we’re all able to provide both of the kids with as much love and attention as we can give. We hope Dana and Ron take time over the next week to get back into a routine and recharge their batteries. Dana has done a great job of watching over our daughter, and making sure she received only the best medical care. Ramona and I are very appreciative of her devotion. If love alone could heal, Chloe would be well tomorrow.

Thank you all for your love and support of Chloe and the family.

David

Hello Everyone,

Dana and Ron are trying to wind down a bit from our anxiety of not having Chloe to watch over the next few days. We know she will be well cared for but that doesn’t ease the anxiety. Dave will take over the blog for a few days and i’m sure he will do a stellar job.

The morning was for Blueberry Pancakes, Chloe’s request. We had a wonderful breakfast with Chloe devouring three of the beasty cakes and Mrs. Butterworth on top. They still haven’t acquired a taste for my pure maple syrup from my friends grove. More for me!

We figured out the feeds backpack and got everyone settled into Grandmas car. The bye byes went well and we all were off. Them to Dave and Ramona’s and Dana and I were off to my house on the East side.

We actually were able to go out to eat at Newport Bay, using my Father’s Day gift card. That was a treat even though we both felt stuffed.

A night with out Chloe is like a night without….ah… Chloe. And Colin the calm master is missed too. We know they will have a safe and happy time over at their Dad’s place but we will be looking forward to our visit and the day they are back in our midst.

Blessings to all of you for all your continued love and support. You may know the extent of joy your hearts have made us feel. We hope you do.

Ron

Wednesday, July 16th:

It’s been a whole day without seeing Chloe.  I can’t believe it!  I’ve not felt this comfortable about being away from her for quite some time now.  She has done so well since Sunday that no one can believe the turn around.  We’ll take it! 

Today she was pretty frisky, shooting Dana with water filled syringes as she came in the room.  She and Colin were having brother sister fun today too.  At one point in the day Colin was dancing around the living room singing Christmas songs.  Those are his favorite July songs.  Dana asked him what he was doing and he said, “I’m being random.”  Obviously he is happy to have Chloe home again. 

Chloe was a Happy, Hungry Camper today.  She sat down to three meals and did a pretty good job on all three.  She is almost up to the full nutrition via her tube feeds and then she’s adding By Mouth foods as well.  This is a very good thing.  Although she is still way off the weight charts we are moving in the right direction. 

The IV nurse came in today to change the PIC line bandages and clean everything up.  It’s not Chloe’s favorite visit as it stings enough to make her wince.  But we all know it is very necessary. 

Dana was able to get away today for a friends visit, the first since May.  She had a great visit with one of her after eight ladies, Jen.  Then Chloe had her alone time also.  She was able to sit on the hammock alone and read some of her get well cards and just veg out.  Next up we will get her fitted into the backpack that holds the pump and feeds.  She will be completely mobile then. 

When I called tonight she was on Lee’s lap getting a backrub.  I do believe she’s figured out how to wrap everyone around her finger.  So be it. 

Tomorrow’s plan is to have Lee, Colin and Chloe go to Dave and Ramona’s house until Tuesday.  We are certainly hoping this will go well.  Chloe is a little sad that she will be seeing her Bearded Dragon from across the room and can’t hold him.  Those are Doctor’s orders.  Apparently reptiles and exotic pets carry different germs that we sickly humans can’t fight off. 

While there Lee is Head Nurse.  We are down to only three times a day for meds and once a day to change the bag of feeds.  She feels comfortable with that schedule.  Last week’s was just too crazy.  The only thing I’m wondering is how Dana will do not seeing Chloe all day, every day.  I know we will be going over there but it’s not the same as staying with her. 

Wonderful Heather came through for us with an air conditioner.  She even sent her handyman over to install it for Dana.  It’s perfect!!!  The room is comfortable once again so if they do end up coming back over the weekend everything will be ready.  I guess the other house doesn’t have air.  I didn’t know that.  Let’s hope it doesn’t really get to 90 degrees.  Thank you Heather, Jody and Al.  You’re the best! 

Did you all see Jeremy’s work of art?  It’s on the top of the Pictures page.  Click on the link and you will see one of the most amazing musical picture shows you’ve ever seen.  To top it off Jeremy picked Dana and Chloe’s favorite song, right out of the air.  I guess we are all pretty well connected. 

I’m not sure what the consensus of opinion is about the difference from Saturday to today.  My opinion is that Prayer Works.  I do believe that the intensity of prayers that went on after my blog that Saturday night was immense.  I also believe in Chloe’s power.  She is very in tune with her Spirituality and I’m sure she received the whisper.  Then she took full advantage of the invitation to rejoin us. 

Bless you all for your part in this! 

Ron

Tuesday, July 15th:

UPDATE:  We have the air conditioner!  Wonders work quickly when you have such a spiritualy wonderful team!

Chloe is home!  Dana was able to drive her home about 3 P.M. today.  That was after an entire morning of reassuring Chloe that being at home did not mean she would get sick again.  She was pretty scared about going home after what happened Saturday.   

The team went to work on her and between the Doctors, nurses and Sara she agreed to give it a try.  So Colin, Lee, Dana and Chloe all WALKED to the car from the third floor with all Chloe’s stuff.  It’s a pretty good hike but with the energy she has shown these last few days I’m not surprised she made it okay.  It did wear her out but that’s a good thing for hot car rides. 

She had a little battle earlier however.  She was trying to be the controlling factor with regards to her treatment.  As I said last night, we were instructed to be the Nurses for Chloe.  We are to make sure she has the feeds going, that she drinks plenty of water and that she is up and about as much as practical.  That was being done when she hit the wall.  So we gave her the space needed for her to get mad at us.  That only lasted a little while when she was back to Chloe.  I think she was testing us to see if we were really up to the task.  Dana was the lead Buffalo for sure.   

After dinner Chloe wanted to go outside.  It is extremely hot in the house.  (In fact, if anyone has an old air conditioner they aren’t using it would be put to good use in Chloe’s room.)  So we went to the hammock to watch for the resident bats to do their Arial dance.   

Dana was cruising the grounds while Chloe and I sat there.  She was in a pretty happy mood and I told her how proud I was that she was putting so much effort into getting better.  She replied in some polite way that I don’t really recall but I told her she really scared the bageebies out of me on Saturday.  “It was like you would have a couple good days and then come up and hit this firewall and slide backwards.  Then you’d get up and run toward the wall again, only to be knocked back again and again.  Then on Saturday you hit that wall harder than you ever have before and it knocked you flat.  I didn’t think you could get back up again.  Then, sometime in the early hours, you got back on your feet, put a determination in your heart and ran toward that wall with a vengeance.  You not only hit the wall but you shattered it into pieces that would never be put back together again.  Then the good days started in high speed.” 

Her reply?  “I couldn’t leave because one more death in your life would crush you.”  What could I say?  I think it was something like, “When Kitty leaves in another 12 years I’ll be crushed.  I’m glad you are a fighter.”  She is just way too old for her age. 

While we were there we decided she needed Angel Hair Spaghetti, as the regular stuff is just too thick, especially with a tube in her throat.  We need Prego Spaghetti sauce and we need root beer floats.   Later she added the little cheese and cracker spreads that you use a little wooden spoon to spread with. 

There were a couple glitches in today’s world but nothing earth shattering.  They left the hospital with a list of meds to get at the Rx.  However, what they were not told was that one of them could only be purchased right away at a retail pharmacy.  The only place that wouldn’t have to wait 24 hours would be a Hospital Pharmacy.  So, in a panic, Dana called me to see what to do.  I went to Emanuel and had to talk the pharmacy into fixing the problem of too many Rx slips floating around so that I could get the medicine and bring it over to the house.  It all worked out. 

Colin hit the wall tonight.  I think he is overwhelmed that Chloe is home… also that his world isn’t quite the same as it was before the thing in her head.  So we are going to have to be sure to afford him the attention he needs as he makes the adjustment from little boy to teenager.  He has shown us he is willing to take on more responsibility but he still remembers how easy it was to be younger. 

Koodos go out to Paula.  She’s a LMT who has a mutual good friend with Dana.  She offered and then came over this evening to give Dana a 90-minute massage.  This is a treat that was more than welcomed.  She even gave Chloe a foot massage afterwards.  Paula has seen, first hand, a critically ill kid of her own and knew she had to come over. 

Dana has someone in the wings for the next massage.  It will take more than one to put her back together after sleeping as long as she did on the windowsill bed in Chloe’s room. 

I’m sure you have looked at the most recent pictures.  Chloe has wonderful hours.  She still wipes herself out but recognizes she needs to build up her body and it takes exertion.  The yeepie scenes were over the word that she could actually have the dog visit in full contact.  There were some concerns but Swamp Fox put a stop to those.  He is the one in the dark blue shirt with Chloe.  Sara is the happy one next to him.  What a team! 

We are going to do everything we can to keep Chloe in a Spirit High.  If all she needs the rest of her long life is an MRI every six months we will be Very Happy.  I believe, along with the firewall she shattered, the thing in her head is being shattered by her will and our love.  Nothing negative could live here. 

Blessings, Ron.

P.S.  You do realize that if you  double click the pictures you get a nice big view of the wonder girl.

Monday, July 14th:

This lil’ girl never stops amazing me. Saturday she had my heart stopped and today she had it racing from laughter.

She has kept her fever under control and has had an appetite due to the stimulant she is getting.

I arrived at the hospital about 10 A.M. today. She was lying there watching TV and had a tray of breakfast that was pretty well picked over. I asked her if she did most of the eating and she replied “Uh Hu.” I asked if she was too full to get the emergency transfusion they ordered for her, that I picked up on the way in. She shook her head yes. So, as I took it out of the bag, I said I guess I’ll just have to bring this back then.

When she saw the Mango Smoothie she reached both hands out as far as she could, broke into a huge smile, and said… No, No, No. Bring it here!

She has wanted this for two days now, ever since she saw the antenna ball man advertise it on TV. She said it tasted even better than she thought it would.

Dr. Norwood came in and sat with her. He looked over the tray and saw Bacon, A Bagel, Soup, Maple Bar, Chi Tea, and the Smoothie. “This is the craziest breakfast I’ve ever seen!” Chloe had put a big dent in it all.

He was there for a while and we took pictures that will be on the web soon. She had him pretty goofy. He said she might not need to have her head tapped as no cultures have shown anything and she’s not in any pain from the site. “Why mess with something that isn’t bothering you?” Good question but we are going to keep the appointment until the 11^th hour. Dr. Dorsen will make the final determination.

He also told her that she would get better, that the thing in the back of her head is just a thing and we are not going to give it any energy… or something to that effect. He said we would work on her nutrition and PT so that she can come back into her normal life. He said she was going to grow up and do everything she wanted. At least that’s what I heard. I’m sure he used other words.

Then Sara, his assistant, and He bantered back and forth like Sunny and Cher. It was quite the floorshow and Chloe was giving them all sorts of fun grief. I think she has a crush on him. It may even be mutual. It was fun and Chloe was eating it up… as she was eating everything up today. She really showed the normal Chloe today.

Swamp Fox turned the fluids off today as well. Now she is getting minimal feeds and is expected to drink enough fluid so she won’t need the bag. We are keeping the antibiotics for a good precaution.

She is not going to be given a choice to get up or not, to drink or not… that will now be dictated for her own good. Sounds good to me. She said that is why she wouldn’t do it as much at home. The nurses weren’t there to demand her to participate.

Chester, Jake the dog that Chloe renamed, came to visit today. He was up on the bed with her again and she put him to sleep with her petting the ears. He was in seventh heaven.

When I left today Dana and Lee were standing vigil over Chloe. When something is working well we like to make sure it continues. It has remained good all evening and we are very hopeful we will be going home tomorrow. It depends on tonight of course but I’m seeing all things working toward an early release.

At home I know everyone will be in good hands. The loving offers of food, household and yard help, along with all other offers has been amazing. I spoke with Brian at Courtesy Auto at Shattuck and BHH today. They called all their vendors and had parts donated so that Dana’s little Toyota will see the road again. This has been a strain on her for quite some time, so to have that kind of gift is just plain heartwarming. Thank you Brian, Chris and Jeff!!

I can’t name all of you who have stepped up but please know that we thank you from the bottom of our hearts, and you shoud know that what you have done is going to be paid forward. Much was paid forward before but it will be again, for sure.

Blessings, The Truth Writer

PS. God I love it when I can write an uplifting blog entry! Also, did you see that you can click on Colin’s YouTube production at the top of the Pictures Page?