Getting his Wish, James is Going to WDW- GKTW March 16, 2010

[snowwhitesmom]

Congratulations James!!

 

[Maryrn11168]

Congratulation!!! That is great!!!

 

[Nettaboo]

WOW way to go James!! that is awesome!!!

 

[kellyw8863]

Congratulations! That is great!

 

[cantwaittoseemickey]

Congratulations James!!Great Job!!!

 

[pnutallergymom]

Way to Go James!!!! Great work!!!!!

 

[alaskanabbott]

OK I am getting a little excited...I just ordered James' Kindle for the trip...we debated either getting him a Kindle, or an IPOD, but I like that the books for the Kindle are a lot cheaper, about $5 compared to $30, and since James really enjoys books, I think the Kindle is going to be great. Does any one else have one of these? We bought it because James can't read anymore, and it has a feature called Text-To-Speech, where it actually reads the book, or newspaper, magazine, whatever to him.
On the home front, James' g-tube got infected and we were riding the fence about him going back into the hospital, but thank goodness his Ped. knows I'm too overwhelmed for that right now, she is letting us come in for antibiotic injections twice daily, instead, WHEW! I just checked it a few minutes ago and the redness and swelling are so much better, I have no doubt it will be better by Saturday ....
I found out that when we get back from Disney James and I are heading back out to the hospital for a while. Apparently our Neurologist, Pediatrician and GI doc conferred last week and decided James needs to be re-admitted to Seattle again, this time focusing on Hem/Onc. I have to admit, this pill is easier to swallow knowing that we have Florida to look forward to first. Even James took the news well. I had been trying very hard to have all his medical done here, because I hate leaving my family, James is tired of hospitals, and just wants to be home, but I guess we'll be going anyway.
I also got a call from the wheelchair place, yes we are STILL waiting, and she said the tracking number shows the chair will be here Friday. We leave out of town Saturday at 5am...so if it isn't here Friday, we're stuck with the crappy chair! But even that is easier to deal with, I mean hey, we'll be in FLORIDA, at Disney World! Hmmm maybe this place really is magical
My hubby took me to lunch yesterday and we made a list of why this is going to be so great
1. It is -10 degrees here today, it will be at least 70 degrees warmer in Florida!
2. No shoveling the driveway at 6am to get the car out of the garage.
3. No doctors appointments
4. No scheduling any appts.
5. No PT, OT, or Speech
6. No driving kids around
7. All of us hanging out together for a whole week.
8. No teenagers on their cell phones during family time! (we don't have roaming)
9. No dishes to wash, toilets to scrub, sheets to wash, or meals to cook for a whole week
10. No school meetings, PTA, wrestling practice, Football training, Weight Watchers weigh-ins or Church music practice
11. No one there to ask how James is doing...which I know sounds like it should be a nice thing, but everyday, everywhere we go we run into someone who wants to know "how is James" and you have to either lie, and say fine, or go into a 30 minute dialog...This is my favorite on the list because for a whole week we don't have to talk about being sick!!!!! HURRAY

 

[pipersmom]

OK I am getting a little excited...I just ordered James' Kindle for the trip...we debated either getting him a Kindle, or an IPOD, but I like that the books for the Kindle are a lot cheaper, about $5 compared to $30, and since James really enjoys books, I think the Kindle is going to be great. Does any one else have one of these? We bought it because James can't read anymore, and it has a feature called Text-To-Speech, where it actually reads the book, or newspaper, magazine, whatever to him.

Amber, he'll LOVE the Kindle..my Aunt likes hers so much she's bought them for other family members!

On the home front, James' g-tube got infected and we were riding the fence about him going back into the hospital, but thank goodness his Ped. knows I'm too overwhelmed for that right now, she is letting us come in for antibiotic injections twice daily, instead, WHEW! I just checked it a few minutes ago and the redness and swelling are so much better, I have no doubt it will be better by Saturday ....

I'm sorry you're having to deal with an infection, but glad you're able to do it at home..so much better than being in Club Med!

I found out that when we get back from Disney James and I are heading back out to the hospital for a while. Apparently our Neurologist, Pediatrician and GI doc conferred last week and decided James needs to be re-admitted to Seattle again, this time focusing on Hem/Onc. I have to admit, this pill is easier to swallow knowing that we have Florida to look forward to first. Even James took the news well. I had been trying very hard to have all his medical done here, because I hate leaving my family, James is tired of hospitals, and just wants to be home, but I guess we'll be going anyway.

Hopefully you'll be able to not think about it while you're gone. I'm so glad you get to have the trip first!

I also got a call from the wheelchair place, yes we are STILL waiting, and she said the tracking number shows the chair will be here Friday. We leave out of town Saturday at 5am...so if it isn't here Friday, we're stuck with the crappy chair! But even that is easier to deal with, I mean hey, we'll be in FLORIDA, at Disney World! Hmmm maybe this place really is magical
My hubby took me to lunch yesterday and we made a list of why this is going to be so great
1. It is -10 degrees here today, it will be at least 70 degrees warmer in Florida!
2. No shoveling the driveway at 6am to get the car out of the garage.
3. No doctors appointments
4. No scheduling any appts.
5. No PT, OT, or Speech
6. No driving kids around
7. All of us hanging out together for a whole week.
8. No teenagers on their cell phones during family time! (we don't have roaming)
9. No dishes to wash, toilets to scrub, sheets to wash, or meals to cook for a whole week
10. No school meetings, PTA, wrestling practice, Football training, Weight Watchers weigh-ins or Church music practice
11. No one there to ask how James is doing...which I know sounds like it should be a nice thing, but everyday, everywhere we go we run into someone who wants to know "how is James" and you have to either lie, and say fine, or go into a 30 minute dialog...This is my favorite on the list because for a whole week we don't have to talk about being sick!!!!! HURRAY

I LOVE this! I know people are well intentioned when they ask about our kids' health, but it does get old..I'm totally with you on the "fine" thing, I'm guilty of doing it as well. Make sure you bring some warm clothes..we only had about 2 mornings when we didn't wake up with frost on the rooves!

 

[snowwhitesmom]

yippee! getting close!

 

[alaskanabbott]

I LOVE this! I know people are well intentioned when they ask about our kids' health, but it does get old..I'm totally with you on the "fine" thing, I'm guilty of doing it as well. Make sure you bring some warm clothes..we only had about 2 mornings when we didn't wake up with frost on the rooves!

I know if anyone would understnad it's another "special" mom! I'm excited about the Kindle, we just found out that we can get audio books off an online place too, so that if Kindle doesn't have it, the audio site may. We paid extra to get it here by Friday, I hope it comes!
So it's frosty eh? Does it warm up in the afternoon? Everyone was bring a pair of pants and a sweater, I may double that. How about swimming at GKTW? My kids want to hit the pool Monday night! Honestly we don't have outside pools here, so they swim at the lakes in the summer...we make them wait until it hits 60 degrees out then it's nothing but lake until October.
I'm so excited for your PTR!

 

[alaskanabbott]

yippee! getting close!

Okay, maybe I'm a little excited
I just went for what I hope is the last trip to the store for incidentals. I bought gum, and card games and color books. I went to the library and got each kid a book, and hid them so they don't finish before the trip starts. My DH made me laugh yesterday, he told the kids "And there will be NO reading on this trip, we're eating ice cream, going on rides and playing games, understood?" it sounds silly but my kids will honestly curl up on a couch and ignore the world when they have a new book.

If I don't talk to you sooner...I'll see you later!

 

[noahsketomom]

Amber,
Soooooo excited for you guys! The warmth, the fun, the carefreeness (is that a word?), the lack of reading rotfl, no worries about avalanches impeding your travel ()......it will all be so wonderful.... YAY!!!

Have a FANTASTIC time!!! Can't wait to hear all about it! ENJOY ENJOY ENJOY!!!!

Prayers for a safe and amazing trip for all!!

Blessings,

 

[snowwhitesmom]

Okay, maybe I'm a little excited
I just went for what I hope is the last trip to the store for incidentals. I bought gum, and card games and color books. I went to the library and got each kid a book, and hid them so they don't finish before the trip starts. My DH made me laugh yesterday, he told the kids "And there will be NO reading on this trip, we're eating ice cream, going on rides and playing games, understood?" it sounds silly but my kids will honestly curl up on a couch and ignore the world when they have a new book.

If I don't talk to you sooner...I'll see you later!

 

[pipersmom]

I know if anyone would understnad it's another "special" mom! I'm excited about the Kindle, we just found out that we can get audio books off an online place too, so that if Kindle doesn't have it, the audio site may. We paid extra to get it here by Friday, I hope it comes!
So it's frosty eh? Does it warm up in the afternoon? Everyone was bring a pair of pants and a sweater, I may double that. How about swimming at GKTW? My kids want to hit the pool Monday night! Honestly we don't have outside pools here, so they swim at the lakes in the summer...we make them wait until it hits 60 degrees out then it's nothing but lake until October.
I'm so excited for your PTR!

It was frosty until our last two days..we started out every morning in sweatshirts, and Piper wore jeans and long sleeve shirts under her outfits some days! The pool was heated to 86 degrees..it was 65 and windy one day and Piper had to swim, so we did..I was freezing outside the water, but in the water it didn't feel as bad. Your kids will prob be fine. Also, I don't know what's forecasted for your week, so your one pair of pants and sweatshirt could be fine!

 

[Mtopher4]

Sorry about the infection Our ped is also nice about Ash's chronic Sinus infections.. better to just medicate than catch something else coming in

I will be praying that chair arrives Friday!!!!!!!!!!!!

2 more days

 

[yinyanggirls]

I love that you made a list of what is going to be great about the trip.

Honestly we don't have outside pools here, so they swim at the lakes in the summer...we make them wait until it hits 60 degrees out then it's nothing but lake until October.
I'm so excited for your PTR!

Wow, your kids will be in heaven! Here in AZ our neighborhood pool isn't heated so we "can't" swim unless it is about 100F. I'm not kidding. If it's in the 90s there will be a few crazy people in the water but mostly the pool is deserted. I think because it's so dry here the top layer (warmed by the sun) evaporates and disappears so the water really never warms up unless it's scorching hot. And when it is you kinda like the water to be cold. Well, enough of AZ weather. I'm so happy for you (and us!) to hear that pool is heated. C'mon Friday!!!

 

[Wee Annie]

On the home front, James' g-tube got infected and we were riding the fence about him going back into the hospital, but thank goodness his Ped. knows I'm too overwhelmed for that right now, she is letting us come in for antibiotic injections twice daily, instead, WHEW! I just checked it a few minutes ago and the redness and swelling are so much better, I have no doubt it will be better by Saturday ....
Sorry to hear about the infection, but glad you're allowed to deal with it from home. After you get the infection under control, you might want to pick up an OTC cream called Calmoseptine. At the first sign of Elke's stoma getting red, weepy, etc, we put it on daily, and it works wonders. I have no idea why it does this, from looking at the ingredients, but it does.


My hubby took me to lunch yesterday and we made a list of why this is going to be so great
1. It is -10 degrees here today, it will be at least 70 degrees warmer in Florida!
2. No shoveling the driveway at 6am to get the car out of the garage.
3. No doctors appointments
4. No scheduling any appts.
5. No PT, OT, or Speech
6. No driving kids around
7. All of us hanging out together for a whole week.
8. No teenagers on their cell phones during family time! (we don't have roaming)
9. No dishes to wash, toilets to scrub, sheets to wash, or meals to cook for a whole week
10. No school meetings, PTA, wrestling practice, Football training, Weight Watchers weigh-ins or Church music practice
11. No one there to ask how James is doing...which I know sounds like it should be a nice thing, but everyday, everywhere we go we run into someone who wants to know "how is James" and you have to either lie, and say fine, or go into a 30 minute dialog...This is my favorite on the list because for a whole week we don't have to talk about being sick!!!!! HURRAY

I love your list, and can say a huge "Amen!" to eveything on it!!! (And I can't even imagine what your running around with the kids during the week is like! I only have three....)

And I can totally relate to your point about not wanting to keep on rehashing how James is doing over and over and over and...well, you get the point. When Elke was diagnosed I was literally inundated with phone calls, emails, etc. that I didn't have the ability (or honestly the desire) to answer. So I loved when my BIL set up a Caringbridge site for Elke. It allowed me to keep everyone up to date on her in one fell swoop (much of our family is far away). I also shoot out regular emails updating on her treatment to friends around town, so I don't get caught in every single supermarket aisle going over the same exact thing. It has worked out well.

Have a WONDERFUL time at GKTW!!!!!!!!!!! From the sounds of it, your children will be swimming when the rest of us wussy non-Alaskan folk wouldn't dream of it! (86 degrees is HOT for a pool! Wow! We're lucky when ours is in the low 70s! Pool here we come!)

 

[maroo]

Awesome!!!

You guys are going to have so much fun!

 

[cantwaittoseemickey]

Amber I am sorry to hear James has an infection in his gtube. Ty has had infections as well. Here is hoping James infection clears and he has a wonderful trip! Also praying for you all during his hospital stay when you get back.

Have fun on your trip! Hope you all do lots of swimming, meeting all the characters and loving all the shows And we will be waiting for your trip report

 

[alaskanabbott]

Amber I am sorry to hear James has an infection in his gtube. Ty has had infections as well. Here is hoping James infection clears and he has a wonderful trip! Also praying for you all during his hospital stay when you get back.

Have fun on your trip! Hope you all do lots of swimming, meeting all the characters and loving all the shows And we will be waiting for your trip report

The nurs said something about "granulated tissue" and that if the injections of antibiotics don't help to ask to have the spot cauterized...ever heard of this? Did Ty's get infected more than once? I thought maybe because it's new...do you think the Mickey gets infected as easy?
OK so you said if I had any questions to ask!!!