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

[pipersmom]

Enjoy it while it's feeling like forever, because the time passes waaaay too quickly! I know what you mean, it's a totally new "normal" when you start dealing with a child's health issues. There's been studies of how many couples make it through having a child with a chronic illness, and the divorce rate is amazingly high. It's just one of those make it or break it things, so be proud of yourselves that you're on the make it end! All right, I'm off for bed...I hope James is in less pain tomorrow!

 

[Momofwishkid]

So glad you guys made it home, I hope James is feeling better soon. Dont feel bad about getting pissy with DH, Im sure we all have done that when facing weeks or months of hospital stays.

 

[alaskanabbott]

So glad you guys made it home, I hope James is feeling better soon. Dont feel bad about getting pissy with DH, Im sure we all have done that when facing weeks or months of hospital stays.

OM goodness, 2 days! You guys must be soooo excited!

 

[yinyanggirls]

Glad you are home, and I hope James heals quickly.

As for that other wife in the hospital, that must have been her first time.

 

[snowwhitesmom]

So glad you are home safely - hope Elijah and James are both doing better - and remember - actions speak alot louder than flowers, right?

 

[alaskanabbott]

Glad you are home, and I hope James heals quickly.

As for that other wife in the hospital, that must have been her first time.

hehe, that's funny

 

[alaskanabbott]

So glad you are home safely - hope Elijah and James are both doing better - and remember - actions speak alot louder than flowers, right?

I want the actions, the words, and CAKE ...a big fat chocolate cake! Yeah, ok, you're right, he's a very good, sweet hubby, even if he hasn't sent me flowers in ages

 

[alaskanabbott]

James is layng on the couch watching a set of history DVD's my dad got him about engineering in ancient civilizations (he loves it!) and what should we get in the mail?

Hurray! And I'm kind of happy we got it while everyone was gone. This really is about and for our James. I read him the entire thing twice and we are going to look at the website, again, later today. James wants to write again to everyone, but isn't up to it yet. So he sends a big HELLO.

and now to remind us why the G-tube is good....

James' last night with an NG tube.
Well, we have our GKTW mail, our itenerary and our schedule, we're getting closer. I even bought some cheap suitcases at Walmart while we were in the big city, hehe. I started packing last night, with the help of Mackenzie, who is at that age where so loves helping. I'll show you what I "caught" her doing last week.

She was helping mom by doing the laundry, awwwww


I have all my, Mackenzie, and Elijah's stuff packed. I have 4 pairs of shorts and one pair of pants for James...and no shirts. All he owns is long sleeve, and while we were in Anchorage we went to Old Navy (big sale ) I kept showing him shirts and he kept saying no, ugh. So my teenager had a good idea. He said just to buy him a pack of white Hanes shirts. Because I can't leave well enough alone, I thought I'd make James some shirts. I saw another post where someone got t-shirt designs, then printed them out on iron-on transfers. She mentioned she found them on one of these threads...anyone know where?

 

[snowwhitesmom]

Hi Amber! Here's a couple of links that I think might help with the t shirts -
http://www.disboards.com/forumdisplay.php?f=105
http://www.disboards.com/showthread.php?t=2028914

 

[kellyw8863]

I just wanted to pop on here and wish you and James well. Ali had her PEG placed last May, which was then switched out to a Mic-Key in December. She now has an AMT Mini One. There is definitely a learning curve, but you both will get used to it. Now we LOVE the fact that she has a tube to fall back on. We have avoided admissions because of it, and we are able to give her medications that cannot be given orally (one is an acid and literally burns). Just keep reminding yourselves that it WILL get easier. Ali was uncomfortable for close to a month, though we saw a lot of improvement after about a week and a half. Two months later, and it was a non-issue. Now I can tug on it and everything.

 

[cantwaittoseemickey]

I'm so glad to hear you are home! I would "think" he will be ok.Ty was doing great in about 3-4 days. I was so amazed at how well it went. He only needed the pain med for maybe 2 days and that was it. We actually went to Tennessee not too long after his long tube placement. It was a start over as we had to pull his original tube and let that heal before they placed the other long tube.

Ask away! I am here to help!

Well James has a long tube, and DR said in about 2-3 months we will go back and have the Mic Key put in. How long was Ty in pretty bad pain after his tube was put in? James is still on narcotics every four hours. Do you think he'll be well enough for the trip in two weeks?
I may have questions for you, I'm pretty lost here.

 

[kellyw8863]

I also wanted to add that even though Ali wasn't 100%, she was discharged from the hospital on a Thursday and returned to daycare the following Monday. She guarded it, but did fine.

 

[alaskanabbott]

I read this on someone's Caring Bridge and it spoke to me. I'm sure many of you have read this, but it is so simply sweet.

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I want to frame this in my room. When I read the line "Yes, that's where I was supposed to go. That's what I had planned."
it hit me like a brick. So my new resolution is to find the Holland in our life everyday

 

[alaskanabbott]

But this was actually a quick, fun, easy and best of all, cheap project. Cost me $19 to make 4 shirts and I still have three transfer sheets left!

 

[noahsketomom]

Amber,
I had heard that Holland poem before and love it!

And your shirts look FANTASTIC! I'd say better than Martha!!

Have you shown them to James? I bet he's going to love them!!!

You're getting close!!!!!

 

[snowwhitesmom]

I have always loved that poem - and I ADORE the shirts! great job!

 

[pnutallergymom]

Amber,

The T-shirts came out awesome!!!! You did such a good job!! Were they easy to do?? I just got a few of the links and might attempt it as well. Any tips??


Hope James starts to feel a bit better soon!! Ask all the questions about the tube you need to...I think we're all pretty much pros now!! You will be too!!

 

[alaskanabbott]

....gang aft agley!

Our plan was to leave town on Sunday the 14th, in the afternoon, since we check into the airport at 11:30pm on Sunday. Now Macylea (James' twin sister) has her first wrestling tournament in Anchorage on Saturday the 13th. So I guess we're going to go to Anchorage on Saturday now and getting a hotel room. This has us spending all day Sunday in Anchorage until we check into the airport at 11pm. Honestly, you can see all of Anchorage in an hour, lol, so I'm not sure what we'll do with the rest of the time....I guess we're going to start our vacation as Alaska tourists.

On another note, drs are going now with the idea that James has "something" nuerologicaly wrong with him. If you didn't read in my intro, James has been progressivly getting worse since last May, and so far no one knows why. He is in extreme pain in his abdomen, so all drs have been focusing on it being a a GI issue, though I had some suspicions it wasn't. Namely James eyes began crossing, and he now seeing double vision all the time, his gross motor skills dropped to a 4 year old level and his fine motor skills now have dropped to a 6year old level. He forgets simple things, like his last name, or a teacher. So they put him through the whole gambit of tests about two weeks ago and came back with the thought he has a nuerologic disorder, what? we still don't know but now we go see the Pediatric Nuerologist. Alaska has ONE Peds. Nuero. so at first they said it would be May before we get in, but if the Dr calls and tells them it's an emergency we can get in sooner.
So is this bad news? I'm not sure. I think we are all sooo ready to just know what is happening that we almost get excited about the possiblity of a diagnosis, even one that is sucky.
Like James said a few weeks ago, he asked me if he had cancer, I guess some kids at school told him he looked like he has cancer, and I told him no, he does not have cancer. He said "so what do I tell them I have" and I told him that while the drs were pretty sure he doesn't have cancer, b/c his blood work doesn't show cancer, but we don't actually know what he has yet. He said "that's too much, I'll just tell them I have the flu".

 

[alaskanabbott]

Amber,

The T-shirts came out awesome!!!! You did such a good job!! Were they easy to do?? I just got a few of the links and might attempt it as well. Any tips??


Hope James starts to feel a bit better soon!! Ask all the questions about the tube you need to...I think we're all pretty much pros now!! You will be too!!

I went to a store called JoAnnes fabric (you may have one) and they have the different color shirts on sale for 4 for $10. Then I bought two kinds of transfer paper...one for darks and one for lights (the color of the shirt). I just followed the instructions and did all of them in an hour. I am not crafty at all, so if I can you can. I'm actually going to make one for each kid now, it was fun! The ladies on the creative link were amazing, I posted what I wanted and I had 4 or 5 designs within a few hours. They would have changed things and stuff, but I loved them as they were. I would take Maroo up on her advice and put in your title it's for MAW, I think they were extra helpful. I hate to capitalize on that, but it's once-in-a-lifetime, so I did.
Good Luck,
PS If I may, I will ask questions as they arise...so far I have to say WAY easier than the NG!

 

[snowwhitesmom]

Amber, I suppose its good the doctors are getting a better idea of what's going on, but I am sure you could use a hug.
He said "that's too much, I'll just tell them I have the flu".
okay - how cute is that?
I hope you alll are having a wonderful day!