Friday, August 21, 2009

Your wish is our command..

Jack made his trek to the Wish Tower last night. Make A Wish has a whole production for wish kids when they come to make their wish. We arrived to see a sign in the front of the building, welcoming Jack to the Wishing Place. First we got to tour the facility, and see everything. They gave us each a token to go make our own wishes and throw them into the wishing fountain. Jack's flew in pretty quick and was asking for more before Josh and I had a chance to think. They have nice garden's and places for Wish families to come visit anytime they want.

Then we went upstairs to discuss Jack's wish. We told them our "shoot for the moon" wish, that involved Pixar, and Jack...and millions of dollars worth of things, and after quickly cutting that out due to improbability, we talked about Jack. Since he is so young, we wanted to make sure that it would be something that he would not only enjoy at the time- but be able to look back and fell lucky that he was able to do it. If any of us asked Jack if he could wish for something, what would it be, Jack would respond "Dizzzzneyland."

Make A Wish usually heads straight for DisneyWorld, as they have more to do, and DisneyWorld accommodates Wish kids very well. You get passes to all four parks, and a Wish button that sets you apart from all the other kids so you can skip lines, meet characters and other special things. You also get to stay in a private village only accessible through Make A Wish, that has bungalow's for each family. There's an ice cream parlor with endless ice cream available to the kids. There is a mayor of the village, that is a Bunny. He celebrates his birthday and Christmas once a week, every week. He is also available to tuck you in at night. So it sounds like something that Jack would never get to do otherwise, which is exactly what we wanted his wish to be. Also, it is something that he understands, so if we tell him he gets to go to "DisneyWorld" he will know what that means, and get excited about it.

So, once that was decided, Jack helped me write it on a scroll. Then we rolled it up, and Jack put it in a solid scroll holder.. that weighed about 5 lbs. Then each of Jack's wish granters and Josh and I all made a wish for Jack, and wrote them down. We pulled out our key that we received when we were notified that Jack was getting a wish. He took the key to the door of the Wish Tower, and turned the key to open the door. (The key actually does unlock the HAVE to have one to get in.)

Inside the Wish Tower was a cool room that changed colors. There was a "water mountain" as Jack calls water fountains, and a big cone with the top chopped off. We all walked in and they showed Jack around. We each read our wishes to him, then he got to place his wish. The room turned dark and he had to follow the lights on the ground around to where the top of the cone was. He placed his wish inside, and the room changed to a bright blue, then we followed tham back around to the cone, and put his wish on top. Then the room changed to a bright pink.. and his wish was officially placed. They told us we can come back anytime and use our key to hang out in the wish tower. Pretty cool.

After Jack made his wish, we got down to business and did a bunch of paperwork while Jack stuffed his face with some low fat strawberry shortcake. He was very happy, very talkative and very friendly with his wish granters. Thank you SO much Leslie for making this happen. We probably wouldn't have even considered it, if it weren't for you. So now we wait, for our doctor's approval (I don't see Dr. Su holding us back too much..) and they will notify us when Jack's wish will be granted. Thanks so much to Make A Wish, a wonderful, magical facility that brings happiness and light to kids who have seen a lot of darkness... and thanks to Stuart and Leslie, our wish granters!

Tuesday, August 18, 2009

Peer Pressure.

The first time I heard about stupid Twilight, (mind you, if it weren't for the redundancy of the word, I would put "stupid" before "Twilight" all throughout this post) was when I visited my dear friend Kim. I respect her, and admire her for her accomplishments and choices in life. But when she broached the subject of this book, the first description she gave me was "this book will make you want to cheat on your husband."

Of course, I now understand what she meant. That Stephanie Meyer's explicit and creative manner of describing the character "Edward" would make you want to fall in love with him as much as the character "Bella" does.

If- that is humanly possible.

I must admit first that I HAVE NOT read the book. I never thought that it would be worth the time. I would hear so many things about "vampire's" and "Edward's eyes" that I felt like I already had suffered through the entire novel- just by overhearing everyone's conversations. Another thing that held me back was how adolescent it appeared. It was about 17 year olds, and all these 25-35 year old women were obsessed with it. "HOW could this be?" I'd ask myself. "What IS it about this thing that is so fascinating?"

Yet, I refused to read it. When asked "Have you read Twilight?" I would raise my eyebrows and proudly say "No" anticipating the shock that would follow. People were always surprised.

Soon, the people I least expected to ever pick up the book would tell me they've read it. "It was good, you know, not the best thing I've ever read", they would confess. Nevertheless I was still taken aback that they'd admit it was a good read. I decided I needed to find out what all the fuss was about. But I was going to go about it the wussy way, and like ripping a bandaid off nice and quick, I would watch the movie- and get it over with really fast.

So to Redbox. One dollar and seven cents later, I sat down with my willing husband, to watch "Twilight." I had a lot of questions. My husband hates when I ask questions.

"Why does he act like that?"
"Do vampire's have glitter-skin?"
"Why isn't she offended by the horrible things he says to her?"
"Why doesn't he just bite her and turn her into a vampire?"
"Why doesn't Bella wear garlic?"
"Why do all the vampire's look like they are seventeen?"
"Where did these people come from?"
"Why is Bella so stupid?"
"Why is Bella such a brat?"
"What does he think Bella can bring to the relationship?"

..and so on.

My final conclusion was that this was a teen movie, for all those girls out there that love everything sexual about a man (except sex, of course) and love to see the hot boy protect the young, vulnerable girl from EVIL all the while being DANGEROUS himself. It's a simple story dressed up with vampire's. And I never did like vampire's.

Gob bless Stephanie Meyer for giving young (and old) girls something to escape to, through reading. Something delicious for their imaginations to taste, guilt-free. But like my sister-in-law stated, if this is the kind of love story my daughter will refer to when talking about romance and passion, then I am sorely disgusted. The girl in this story is weak, naive, reckless and selfish; lusting after a man she KNOWS she shouldn't. There's no attribute this character holds that I would tell my daughter to admire or live up to.

As for the book, I should read it to justify my dislike for it. It is only fair. So someday- when I have time and money to waste, I'll get right on that.

(PS. Kim, my darling, I still love you, and hold you in the highest regard. )

Friday, August 7, 2009

Make the most of the situation..

Due to the lack of weight gain over the last year- Jack has been able to recycle last years summer clothes. It is a good thing- making great use of five-dollar tee shirts that he can wear over and over again.. always fitting into them just fine. But lately I feel like they are starting to seem BIGGER now. Maybe it's just me-

I think for sure his legs are longer- but as for everything else? He is most definitely smaller. At the last appt. Jack weighed in at 23 lbs. If you remember, last summer when we postponed surgery it was because Jack was 22 lbs. So over all, I suppose we've made progress.

Let's give a hand for that One Pound.

Thursday, August 6, 2009

Another Post-Op Appt.

We woke up quite anxious, with Jack's face a little puffy and we had started giving him a little bit of fat. So our expectations of his x-ray were all over the place. To our surprise, and relief- the x-ray looked great. On top of that, Jack's saturations were 88-90. I was so happy. Jack was in the best of spirits, running up and down the halls of Primary's with the happiest attitude. We sat down with Dr. Su and Dr. Jou, and they agreed to take him down one dose of diuretics. (This always scares me, because I have the attitude of if it 'aint broke don't fix it, and Jack was doing great on his med schedule.)

So down one dose we went. As we we were about to stand up and leave the examination room, Jack suddenly said "Thank you Dr. Soup! Thank you for my heart!" and hugged Dr. Su's shoulder. It was absolutely heart melting.

That was tuesday. Of COURSE- wednesday morning, Jack wakes up with a runny nose. Something inside me panics when he adds any kind of symptom, heart-related or not. Runny noses have nothing to do with the heart. But this is all what happened last time. We went down on the diuretic's, Jack started getting sick, and we ended up admitting him for another chest tube. I'm so psycho now. I need to remember that this time is different, because we had surgery to prevent pleural effusions and we have taken extreme precautions to keep them from occurring again.

I still try to limit Jack's fat intake to 3-5 grams per serving. The Dr.'s want to see us again in 6 weeks. (Dr. Jou suggested 6 MONTHS, but Dr. Su knew better...)

So everyone pray that we continue on with progress...