Charlie Is My Name

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2011-04-23T15:00:00.000-04:00

Charlie is a kid with depths locked inside himself, but sometimes we get a glimpse. I didn't expect to find anything when I started downloading photographs of our trip to Pittsburgh. Boy was I surprised.

During the trip, we had a problem with Charlie, it began when he balked at doing anything other than swimming at the hotel. We dragged him to the Carnegie Museum and at the entrance he started, "The Charlie Dance."

This is where he digs his heels in and decides that he will make life miserable for us, until we give him what he wants.

He wanted my $400 camera.

I finally gave in and gave it to him and showed him, briefly, how to use it. I uttered a little prayer under my breath, that he would not destroy it. The things that I found on the SD card afterward were amazing.

I called him in and asked him to explain the photos and I have captioned them as he described them to me.

I love this kiddo.

Charlie skiing down Snowflake at Denton Hill, PA.

2011-03-11T12:32:00.000-05:00

2011-01-11T19:36:00.000-05:00

On Sunday Mommy and I went at Ski Denton. Mommy and I rode on the chairlift. It did blow snow in my face. It was cold. I was happy, but Mommy was scared.

Well, let me see. Ha Ha! I went Tubing. I did so good!!

I want to go back.

Christmas 2010

2010-12-25T19:38:00.000-05:00

Charlie Skis.

2010-12-20T22:27:00.000-05:00

Sorry, it's not Charlie writing today, but I will ask him to write soon, it's been hectic here. Today was Charlie's second time on skis. This time we came prepared with a ski harness, which looks like a toddler leash. It has crossed straps which go across his chest and reins in the back that his Dad held to keep him from going out of control.

At first Charlie went very slow and Chuck kept the reins very tight and close to him. Then, as Charlie made more runs on the bunny hill, Chuck was able to loosen the reins until Charlie was controlling his own speed by snowplowing.

I made a social story about skiing, which shows him that the snowplow maneuver looks like a large wedge of pizza and to go faster, your skis look like two french fries. He had fun. We went for an hour and then packed the kids up and went home. Hopefully we will go again on Thursday.

I never thought he would be able to ski.

The idea of him on the lift scares me to death though.

2010-12-20T08:23:00.000-05:00

An oldie, but a goodie (Mom's Comment)

Update on ear

2010-06-21T20:40:00.002-04:00

This is Charlie's mom, we took Charlie in to Geisinger and they have been treating the ear now with ciprodex drops and oral antibiotics. They took a tube of cream consistency fluid out of his ear under the microscope. The doctor feels he was misdiagnosed and she can't even begin to see if there is any tumor until the fluid is out, but she affirmed that doing a radical surgery would not be good in his case.

So we have hope. He goes in next Wednesday to be sedated by mask anesthesia (no needles or IV's) for further cleaning of the ear, that will have given him 9 days of cipro in the ear, which should help. Continued prayers are gratefully requested.

2010-06-12T21:49:00.000-04:00

I am playing knuckles the echidna in Sonic the Hedgehog 2. I am at the Chemical Plant Zone.

I am at Erie having a campfire. Yesterday I took a rest in the loft and I played on my nintendo DSI. it is blue. I got it from Radio Shack because Dad got it for me.

I got the nintendo DSI because I was in the hospital. Rachel brought me purple flowers in the hospital.

I was in the hospital because my ear hurt. They put an IV in my hand. They fixed me up. I liked the hospital, I cried when I had to stay again. Then Miss Sue called me and said Hi Charlie!

then I went for a vacation and today we went to the Erie Zoo.

We will be on vacation until June 17th.

Charlie has some problems with his ear

2010-06-12T21:41:00.000-04:00

We are at the cabin at the lake and I wanted to let you know about how Charlie is doing.

We went to the dr on Tues and she admitted him to start IV antibiotics and steroids to get the infection in his inner ear calmed down. He has something called a Cholesteaoma,

We had two choices, according to the local ENT dr.. One was to drain the ear and put in a tube and then later get a CT scan and see what's going on. The other was to radically go in, empty the ear canal of everything, which would have taken out the ossicles, the bones of hearing, which would have required later surgeries to try to re-establish his hearing in that ear. He would have been rendered deaf for at least 6 months, but more than likely permanently.

The recovery period for the radical surgery is about 3 weeks at least.

Anyway, we opted for tubes and to get the infection down and see what's what. They did the surgery and then required Charlie to stay another night (lots of tears there for him) and they kept up with the IV antibiotics and steroids and pain meds. They lost the IV site four times and he has a lot of battle scars, poor little guy,

During the surgery, the doctor found that the growth on his ear drum or in his canal is congenital. I don't, at this point, know whether that is good or bad, but that's what it is.Is it better to have this have been growing all the time, or have it blow up just from the infection, I don't know.

At this point, Charlie does not have a hearing loss, well in some lower ranges, but that might have been from the fluid.

I don't know how big it is or anything else. he is having less pain now, but is on a continuation course of Keflex and methyprednisone (for swelling) he's back on the prevacid solutabs to try to protect his tummy from the drugs. We are keeping him away from the water.

We did find a cool band to put around his head, recommended by his audiologist and we have plugs to put in his ear which will form to the outside of his ear canal and not enter the canal itself, but we still want to reduce his exposure to lake water by all means necessary. Chlorinated water, apparently is not nearly as dangerous, but still, we want him DRY for good healing.

I have set up three appts. One our pediatrician set up with a ent in Geisinger for a second opinion, but I called to make appts with a practice in Erie, my favorite ENT, Dr. Steehler recommended a Dr. Lipman in Erie and we have an appt in July with a doctor from the Cleveland Clinic. Why not utilize the best if you're within driving distance?

The thing that we have been told is that these growths can grow and destroy the ossicles, and can even grow into the brain because the bone between the ear and brain is air filled and easily eaten away by these invasive growths. We can't afford to fart around with this, we need to move fast, but carefully and we need to get this infection down, so that they can see what is in his ear.

Please pray for Charlie, that this thing doesn't grow and let's us take an approach that preserves the ossicles. Some highly skilled doctors in great facilities can remove cholesteaoma from the ossicles and preserve as much as possible. If any is left on the bones, we have heard that it will regrow and we will be faced with the same problem again.

So that's it. For now we are at the cabin and trying to keep the kids away from the water. that's hard, but at least we're here. If you are involved with a church, PLEASE put Charlie on your prayer list. All of us need help, we are scared and trying to wade through this information that we don't 100% understand. We are not telling Charlie that he might need more surgery. He was very traumatized from the last one.

thanks,

Jan

Charlie writes an Essay

2010-04-13T21:43:00.001-04:00

Hi, Charlie's mom here, I wanted to post something that Charlie wrote for the PA state PSSA pre-testing. What's so great is that they constrain the teachers not to prompt the kids, so I know that this came out of his head. I was floored. It's about life in a one room school house as compared to school today.

I had to alter the color balance to really show the writing, so that you can read it. You will have to click on the image to read it, otherwise it will cut off.

2010-01-31T15:18:00.000-05:00

I know how to ride a bicycle.

No! NO! This is terrible! You can't ride a bicycle in the snow!

Cause it will fall down.

I am playing New Super Mario Bros Wii.

2009-11-30T09:55:00.001-05:00

My chevrolet silverado z71 has true duals on the back. It's blue.

For Christmas I want my Spiderman three toy. It's an action figure.

2009-10-14T16:13:00.002-04:00

my z71 silverado has flowmaster and altezza taillights

The Fair.

2009-08-06T22:44:00.006-04:00

Once upon a time there was a boy named Charlie. He got into the upside down ride at the Potter County Fair and I went upside down. And I was calling for help. For stopping the ride. Because of you watched me go upside down.

I ate pizza at the fair and drank lemonade and it's my favorite! And I hitted a balloon, I thought I was getting a SpiderMan toy because I can't, because it's so big and black. Because I couldn't win it. I was sad.

Dragon Wagon, Rachel rode with me in it. Because it wasn't so scared, because I am not so scared.

I did ride on the bumper cars. And I did ride with the other boy, his name was Dillon. And Dillon did spin out and crash. And I crashed the other cars.

I painted a flower painting and it got hung in by all the pictures. And I won a red ribbon. And I did ride on a train. And I rode on a coach, and the conductor train.

And I went sliding down the Magic Carpet, laying down, sliding down on my back. Because of you watched me, because you did.

On Saturday we are going back to see the fireworks. Fireworks still scare me. I will be brave. Yes I can!

Fear of storms.

2009-07-29T10:41:00.002-04:00

Dad told me that is it gonna thunder because Dad said maybe. Because the thunder doesn't pass by.

That it is raining. Because loud noise will come. Will the loud noise come?

2009-04-24T16:59:00.002-04:00

My birthday was Tuesday. I am nine years old now. I got a western express train. I would like a Chevrolet Avalanche.

2008-11-16T09:11:00.003-05:00

Janet Bowser likes a Chevrolet Avalanche crew cab.
I like a blue x-acto power house pencil sharpener in Mrs. Daniels class.
I have a boston powerhouse pencil sharpener.

Charlie's First Floral Painting

2008-11-16T09:10:00.003-05:00

**This is Charlie's mom, Charlie painted this with some help. I showed him how to load the brush and helped him steady his hand, but he made the strokes.**

2008-11-14T20:17:00.003-05:00

I would like dodge dakota sport toy car for Christmas.

2008-11-09T16:07:00.003-05:00

I would like a Dodge Durango R/T

I like a Ford F-150

I like a Cadillac Escalade ext

we went for a ride to Elmira NY today. sams club and target. I got a lightning mc queen bubble bath car.

2008-11-05T18:08:00.003-05:00

charlie bowser likes a chevrolet silverado.

2008-11-01T21:02:00.002-04:00

On Halloween, I saw a dodge durango police car with altezza tail lights and tail pipes. It was black.

I just love a Dodge Dakota SLT. Blue with two white stripes.

2008-10-25T12:41:00.002-04:00

I would like a gmc sierra.

2008-10-16T16:38:00.002-04:00

I would like a Chevrolet colorado and a chevy silverado and a Chevrolet trailblazer and a Chevrolet tahoe and a chevrolet hhr

I didn't get a shot yesterday. I went to the doctor. She started my heart. She listened to my heart. She checked my ears and my eyes. Now I am done.

And I ate a Popsicle.

I learned in language arts and lunch and recess and reading and recess and math and science and announcements and dismissal. I like a chevrolet suburban 2500 4 x 4.

Wyatt drew a scary pumpkin.

Overheard This Morning

2008-10-07T07:51:00.001-04:00

"I sense danger in second grade."

This from Charlie as he was getting his coat on to go to school this morning.

From Charlie's Mom.