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“It’s the first day of School…woo-hoo!”, From Chloe Sept 3, 2008

Hello Everyone!

‘Um…this morning my mom didn’t have to remind me 30,000 times to get up.  When she wanted me to get up , I opened my eyes and then got outta bed.  I practically broke Mama’s back with all my school luggage .  My teacher is awesome.  After lunch, he asked me to come into the hallway with him.  He asked me if its ok if he told the class about my illness.  I said yes.  So we told the class about my illness.  People asked questions and thats it.   

When I got home from my daycare provider’s house(she’s like another grandma to me)  I took Ivey on a walk.  I have a new routine with her.  If Ivey starts tugging on the leash or choking herself or see’s another dog, I stop.  Then I sit her down and make her wait.

Later on Colin and I went on a bike ride.  It made me feel free!!

Goodbye,

Chloe

Tuesday, September 2, 2008 From Chloe

Hello again,everyone!  On Sunday we, Mama, Ron, Colin and I, had a big day. We started out at Ron’s house. Then we went to church and stayed there ’till 3:15, cause of this thing called  “Financial Peace University”.  Then we went to a baby shower for a belly dancer named Jana. Lastly we went to a musical party.  Mama sang and Ron played his Saxophone. Colin and I played with Karla and Uwe’s (muisical house) new kitten Sophie.

    Sorry but I don’t have much to say.

                                                        Good-bye.

                                                                        Chloe          

From the Mama.   

Tomorrow is the first day of school for this fourth grader (Chloe) and Colin (eighth grader) . She is feeling nervous and Colin is “kind of ” excited. I did notice both the binder (Colin) and the backpack (Chloe) are already packed and ready. 

Can I just say that I’m grateful for this very second?  Colin is outside doing what he does (“I was rearranging the dirt from the hole I filled up”) to hearing Chloe singing…….earlier today I heard them both singing  the song, Blue Skies.  The first line of that is, “Blue Skies….smilin on me….nothing but blue skies… do I see… 

Colin is reading this over my shoulder and editing as I go.  Seems we are all on track.  

Over the weekend we had friends come over with the gifts of food.  We really enjoyed trying new foods (home made pesto, peach cobbler, tofu (its the best tofu we’ve had to date) and peanut butter cookies…etc.)  This is opening up a whole new world for Chloe as she nibbles, then discovers something new to delight in.  Thanks so much to all who send thoughts, who send love, who send food, who send the healing in all directions. Nothing has gone unnoticed. 

Also, Chloe spoke to her dad recently about milkshakes and fries……….Sometimes its about the little things as well as the big.  Can you tell we are smilin?  God bless us, every one!!!.    

Happy September. 

Dana 

P.S.   Ivey, our dog thinks she’s in a new heaven.  I’ve noticed both the kids enjoy taking her on walks…..about 2x per day.   Yes….those blue skies….are smiling on us all.

Friday, Aug 29th:

Today didn’t produce the results we were hoping for at the doctor’s office.  Chloe has been off feeds for a 10-day trail… and she lost 3 pounds.  Bummer!!!  We were so hoping the tube would be out but this is not to be.  In fact, we will be back on all night feeds again and soon be upping her meals to five per day. 

The trooper she is, there were a few tears but it was not hard for her to understand the situation.  She will deal with it as she has all the past inconveniences.   

Dana seemed to take it harder than Chloe, but she too, is bouncing back.  Periacton and feeds are the course now.  Stimulate her appetite and throw the calories to her while she’s asleep.   

Chloe was matter of fact about it all when she told me on the phone tonight.  Then she said she wasn’t surprised because she hasn’t done too well with breakfast lately and the other two meals “I did … okay.”  This just tells me she knows the goal and will go after it with zeal.   

I’m hoping that because she gained so much weight in such a short period of time that much of that weight was fluid.  Fluid weight is the first to go in any exercise program so maybe her body is just adjusting to all these changes.  Maybe it’s just saying, hang on guys; I’m trying to find my norm. 

Calorie count is key right now, the dietician wants 1400 per day.  That’s very doable.   

Laura, our good friend from church, brought a Peach Cobbler over.  Great timing.  I understand I’m even getting a taste tomorrow.  Yum! 

Another perk was a letter Chloe received from one of her Harry Potter club girls.  She is in Japan on vacation so hasn’t been available to come over yet.  Those three girls are very close.  Looking forward to seeing them all together again soon. 

Patty, Jake’s mom, showed up for a surprise visit, as she was in the area.  She brought Harry Potter #6 for Chloe and said #7 is on the way.  Reading a book of 500+ pages is a huge feat for a 9 year old, but finishing multiple 500+ books is something I wish I had been encouraged to do at that age.

Too bad Chloe was out walking Ivey at the wrong time.  They have become such good friends.  Dove Lewis Animal Hospital is also a place Chloe has decided she wants to start her donations to.  She was very happy to hear she will be getting a tour of the facility soon.  And Laura is going to bring her on a field trip to a Kitty Rescue.  Chloe’s good friends have some newborn kittens so she was all over that news.  And, of course, she is bugging Dana for a kitten.  I’m just afraid it might become a snack for Ivey.  Ulgh. 

Tonight was a night of nerf guns and how can we drive Ivey crazy.  Sounds like they succeeded in many ways.  Dana is trying hard to get the routines back to satisfactory.  Getting the kids to do their jobs during the day has been a challenge, but with some very rigid instructions and expectations laid out today we are hoping for some positive results. 

It’s special to see we still have viewers in good numbers on the blog.  Knowing your support remains strong is more helpful than you can know. 

Blessings,

Ron

Tuesday, Aug 26th, part du:

It’s been awhile, but I’m back.  No, I didn’t fall off the roof, no, I didn’t get scared away by a boogie man, no, I didn’t run off with my secretary… I don’t even have one…  But I did get to spend some time with my daughter and her husband and my twin 2 year old and one 3 ½ year old grandsons in Wisconsin.  It’s been way too long since I saw them.  Tremendous kids! 

So Chloe has had to take up the slack on the blog and it looks like she has been having fun and doing a great job.   

I’ve known Chloe more than four years now, and now I’m getting to know a new Chloe all over again.  Coming through what she has come through is bound to change anyone, and she is no exception.  What I see most of all is her self worth has grown immensely.  Last year, especially, I noticed a little girl who was intimidated and scared by many kids in her school.  Time will tell, but I think we will see a whole new, exciting, side of her this year.  She’s beefed up her body and she’s beefed up her spirit.  If anyone tries to rock her boat I hope they are ready to get wet. 

Sunday was special for Chloe and the people at church.  Many had not seen her since before the operation, and they were surprised to see how great she looks.  Her smiles, hugs, laughs and overall energy is so different that they are simply floored.  She still has her tube in but you’d hardly know.  It’s just another part of her face right now.  Sure, she’d love to have it gone, but it doesn’t make her the least bit self-conscious.  

Today I made a return trip to the house to bring something over that I forgot.  Chloe came running up the stairs, slipped, and said a word that cost her 25 cents in the “woops fund.”  She was pretty embarrassed that I heard it and called her on it.  She’s fun to tease though. 

Dana, Sandy, Chloe and Colin spent the weekend together as I was still with the kids.  So they went to the coast and flew kites.  They also found out how good the blueberry cobbler is at Kylos’ restaurant.  The next day they went to the “free” state fair.  From what I hear the only thing that is free is the entrance.  Everything else you need to dig deep for.  Good thing it’s only once a year.  They did dress up for an old time western picture that sure is fun. 

It’s close to school starting so we are all in grand anticipation of the removal of the tube!  It would be wonderful if she could start school without a tape face.  Everything is pointing to this becoming a reality.  We’ll be celebrating that day.  Chloe wants to keep her tube as a souvenir.  Humm, interesting… 

Be well everyone.  We love you all.  Please know you have made a huge difference in our lives.   

Blessings,

Ron

Tuesday, Aug 26, From the “mean mama”

….Just to create a balance here of we ARE a real family, Chloe is very disturbed that I would ask and expect her to pick up her room.  I gave her time. She chose to do nothing.  The consequences are really dire.  She has 24 hrs to take care of business or her latest Harry Potter book goes into a time out.  Yes, thats harsh and already she is sending me vile looks and putting on the tears.  I am really grateful we have this open relationship in which she can ‘vent’ to me, her perspective on my meanness. Because of her lack of ‘team’ effort, she has additional chores. 

The above paragraph actually gives vital clues to how she is doing.  Healthwise, she is already there.  Now its time to return to some day to day responsibilities.  Yes, I know her summer was(I’m stuck here as to a correct word suitable for most readers)…ah lacking.

Her appetite is very good still. I stopped to get her favorite donut tonight.(Apple fritters) and thats where we are headed right now.  Donut time in 10 minutes.  I’m hoping Ivey(our dog) doesn’t jump upon the chair to steal a donut like she did last month.  Colin and I have maple bars waiting. 

Guess you can sign me

mamamean.

Saturday “State Fair Day” Aug 23, From Dana

Yesterday was full, start to finish. I think we took off for the Coast about three times before actually leaving FOR the coast.(Miss Chloe forgot her sunglass’s and thought they would be important to have. Yes indeed…we found the sun)

We arrived at Lincoln City in time for lunch at Ron/I’s favorite restaurant, Kyllo’s. No one seemed to beleive me. There is only one dessert on earth and they make it there.(Marionberry cobbler/Vanilla ice cream). Turns out we were all to full from lunch for dessert. We returned later for that…..after the BEST part of the day. Chloe and Colin both ended up ‘oohing and ahhing’ over the cobbler and Chloe exclaimed “We’ve GOT to order antoher one of these!”.

Chloe has a dragon kite and Colin has a pirate ship kite which they flew for the first times yesterday. Sandy had a smile on her face the entire time SHE was flying kites too. Can anyone say “go fly a kite” is the lost meaning to finding your happiness? We found amazement within the first hour of flights, another boy and girl arrived right NEXT to us with the SAME two kites. How likely is that?

Colin said his favorite part of the day was..”When the water came up on the blankets”…We scrambled to pull the blanket, our purses, clothes etc from the fast pace of the ocean. We lost this game more than once. Sandy has a sandy purse….inside and out; wet sand. Chloes favorite part of the day was “flying Sea Serpent”(the name of her kite). Sandy’s favorite part of the day?.”Peanut butter pie”. Mine? I had so many. I think I’ll keep a vision of using all the senses…sound of the ocean, vision of my children healthy and happy, toes in warm sand and seeing my sister fly a kite.

Chloe says ” I think flying my dragon kite yesterday represented what I went through….like when he stayed up in the air, thats what it was like before the surgery. But when he crashed, thats what I was like, after the surgery. When he tried to go up, but crashed, thats what I was still trying to do after the surgery. He did that a couple of times but then I threw him up into the air and he flew up as high as I would let him”

Since being on the trial OFF her extra nutrition feedings at night, she still seems to have a good appetite. She is aware of this being a key component for …well you know….that tube coming out of her nose.

Currently. Chloe is reading this over my shoulder and approving/disproving every word(insert her giggle here, everyone)

We took the scenic tour of the coastline and found the devils punchbowl. Look for pictures in the near future of this adventure. “It was scary, I thought I would drop my sunglasses”(in the punchbowl) said Chloe. The drive home was long. Here is the amazing part. As we pulled towards the traffic light, two blocks from home, we heard a thud , thud , thud. Flat tire. ACK!

Ron arrives home tonight from visiting Kelly and Chris and grandsons! I hear they had painting days, zoo days and precious catching up days. Like I said, we are all trying to pack summer into one last week or two.

Today we are headed to the State Fair. We await news of the flat tire being fixed as well.

Truly, nothing’s an obstacle these days.

Luv,

Dana AND Chloe

Aug. 21 2008 Yet another post from Chloe “GREAT NEWS!!!”

Hello again! As you might have read I have wonderful news! I have qaulified to a program called “Make a Wish.” I’m thinking about going to the Harry Potter premeir, ’cause I’m a big (I mean HUGE) Harry Potter fan. If it’s ok mabey I’ll be able to bring a couple of friends, too.

I’ve been doing well.

See you!

Chloe

Wednesday, August 20, 2008 Fom Chloe

Hi, there! This is Chloe reporting back to you with great news! Yesterday I was informed that I could take a 10 day trial, with no feeds. I still have the nose tube, I just don’t use it. Between you and me, it was tough to bring the pole into the bathroom at night!

This morning a  Dove-Lewis therapy dog named Jake visted me.  My dog Ivey thought the visit was for her.  Later on me and Jakes owner took him on a walk.  Some of the teachers that I know let me bring him into the school and say hello.

I had spaghtetti for dinner(Thanks Aunt Sandy for cooking it).  One small bag of popcorn.  Some Snapple Iced tea and garlic toast  A couple of sour watermelon things and thats it. Good-bye. I will be at Hogwarts, of Witchcraft and Wizardry.(I’m going to be reading Harry Potter tonight)

P.S. Grandma we’re almost there!!

Chloe

Tuesday, August 19 From Dana

Watching a child you think you’ve known for nine years evolve a new persona has been a beautiful thing.  Have you ever wondered about the magical journey a butterfly takes? In my third grade , it was our class project.  There was no movement for awhile as we watched the cocoon darken and appear nonliving.  Imagine the delight to see the metamorphis occur. The absolute dedication to life the butterfly shows.  And then, the colors appear. The best of all is witnessing the freedom flight upward. Up, Up and away……

Thats Chloe.  If you never knew a butterfly, we’re watching one now.

On Saturday a work party of family and friends came together to help ‘Clean house” and weed the otherwise overgrown thicket of blackberries and ivy.  The outpouring of giving turned into a festive event.  Can anyone say ‘working in over 100 degree heat is fun?” I think not and yet, the proof is in the pudding.  Chloes job was to keep our dog Ivey in her room.  She also had 2 friends over to play with.  Yipee!! I hadnt realized how run down this house and grounds were. Denial works for me some level

Colin and Chloe have bounced back into their relationship of “she bugs me/he bugs me” then I find them together quietly getting along.  I’ve really paid attention to Colin’s side of this summer, even though I’ve left it unmentioned quite a bit.  He morphed too and became his own butterfly warrior. 

Yesterday was Chloes pediatrician appointment .  The room was full as the doctor came in.  Daddy, Aunt Sandy, Colin and Mama were there. The amazing news is her weight is up 4lbs and she is off Periactin, the appetite stimulant. Also, she is within 2 lbs of her goal weight set by the dietician. Are you clapping and singing here?????? Chloe has a new found passion for ‘drug-free’.  She wants nothing to do with medication of any kind.  She is adamant regarding this subject.  We are awaiting phone consults between her dietician and her pediatrician as to the next step towards reducing the overnight nutrition as well as removing the nose tube.  More later on this.

We’re in the midst of also arranging a ‘home’ visit with Chloes beloved “Chester”, the golden retriever who dedicated time to her in the hospital.(His real name is Jake but Chloe always thought he was a Chester, so ok…) this week as well as a Coast trip and State Fair later this week.  We’re trying to pack summer into a tight package this week. 

I guess what still surprises me are the little things.  Yesterday we went to Baskin Robbins for ice cream and Chloe acutally finished a cone, whereas before she would only take a bite or two but still profess to love it and want it. 

We also enjoyed seeing her chase down a teacher yesterday at Fred Meyers to say hello.  Her self esteem is winning.  Her self confidence is rising in spite of being stared at by others with the nose tube in place.  Yes, she notices that too, dont think she doesnt.  Being different wont get in her way, I beleive.  In fact, I’m wondering at this point, what WILL?

May you see the miracles in your own life and if not, you’ve got at least one tucked away in knowing they do exist.

Much love,

Dana

Saturday, Aug 9th:

‘The road to recovery is long and harrowed’… Not for Chloe.  Not this lil’ firecracker.  She is doing such good work toward rebuilding that she could be her own Olympics all by herself.   

Yesterday she and Mama went for a walk with Ivey, to the schoolyard.  Spinning her NG tube like a bolo in between all of the running, swinging, sliding, etc., shows how fast her strength is coming back.  She does complain of a “difference in the way her right foot and leg work” but we aren’t seeing it ourselves.  I wouldn’t be surprised if there is though, since she didn’t use her legs much for two months.  Mine wouldn’t work the same right away either.

It seems Aunt Laura was there for dinner last night and into the wee hours.  She probably stayed longer than expected just trying to dry out from the syringe dousing Chloe has become famous for.  Didn’t she ever hear the one about “don’t bite the hand that feeds you?”   

Yesterday she also had a nice visit from her former teacher Barb and Barb’s 10 year old son, Sam.  Apparently Sam and Chloe were quite patient as Dana and Barb visited…  The stuffed tiger from the zoo made the time pass quicker I’m sure.  Aaaarrrgggg….. another stuffed animal!!!! Ha ha.  She has her own zoo. 

Today our lil’ Chloe is Nurse Chloe, as Dana finally admitted that she is sick.  It’s been coming on all week and today was a hit the bed and stay there kind of day.  Chloe loves to fulfill the helper role.  Colin does a good share as well, especially when he’s allowed to make dinner.  I think he will turn out to be a chef someday.  Between eating and preparing he has all the necessities and qualities.  As for Chloe, I think she’s going to be Whatever She Wants To Be and not have much trouble becoming her wish. 

So we continue our good news journey with the thanks to all our supporters.  We may need a lawyer though, to figure out all the various bits of paperwork the hospital, doctors, labs, etc., are sending daily.  It’s always amazing to me that they can’t just pile them all into one big bill, send it, let us pay the deductible, and then divvy it up with the insurance money.  Can you say “over and above the usual and customary charges…?” 

Oh well, life, thank goodness, does go on, and so will we.  We offer many thanks to all of you for sticking by us throughout these rocky times.   

As for the blog… You keep reading and I’ll keep writing. 

Blessings,

Ron