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

[alaskanabbott]

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!

We figured that all the kids in his school will be begging for the flu shot next year!
And I'm better today, virtual hugs accepted! We wanted to take up three with us on Saturday and leave three with grandpa to drive up the next day, and it just so happened the 3 we wanted to take are excited to go to Anchorage early, and the other three had plans they want to stay in town for! So really instead of this being an irritation, I need to think of it as an early start to our trip PLUS we get a little extra sleep that day, and I never complain about EXTRA sleep

 

[snowwhitesmom]

yep - just consider it the first leg of the trip!

 

[yinyanggirls]

Sounds like the extra day will work out fine. You did a great job on the shirts! I'm impressed!

Just to warn you, I've worked with 6 different neurologists in three different states since Phoebe was born, and I can only say that one came across as human. It seems that neuros tend to have a God-complex. If your state only has one to begin with he is likely to be an extra big jerk. For your sake, I hope I'm wrong but I just wanted to warn you. Don't let him belittle you, or cut you off or let you leave with unanswered questions. Hopefully he'll be a genius and figure the whole thing out.

 

[alaskanabbott]

Sounds like the extra day will work out fine. You did a great job on the shirts! I'm impressed!

Just to warn you, I've worked with 6 different neurologists in three different states since Phoebe was born, and I can only say that one came across as human. It seems that neuros tend to have a God-complex. If your state only has one to begin with he is likely to be an extra big jerk. For your sake, I hope I'm wrong but I just wanted to warn you. Don't let him belittle you, or cut you off or let you leave with unanswered questions. Hopefully he'll be a genius and figure the whole thing out.

UGh, not what I want to hear right now...the states only Peds GI already pulled that on me last week. Maybe he'll try to be th ehero and figure this out...we can hope!

 

[yinyanggirls]

UGh, not what I want to hear right now...the states only Peds GI already pulled that on me last week. Maybe he'll try to be th ehero and figure this out...we can hope!

I'm sorry to be so negative. I just remember feeling so blind-sided after meeting with several of them. I wasn't prepared for the attitude and it got me off track. I left thinking I should have said.....

So again, I really hope I'm wrong but just wanted you to go in thinking that this guy could be a jerk, but that doesn't have to stop you from getting the answers you need! I hope they get you in before May!

 

[alaskanabbott]

I'm sorry to be so negative. I just remember feeling so blind-sided after meeting with several of them. I wasn't prepared for the attitude and it got me off track. I left thinking I should have said.....

So again, I really hope I'm wrong but just wanted you to go in thinking that this guy could be a jerk, but that doesn't have to stop you from getting the answers you need! I hope they get you in before May!

It's not negative, I understand completely. I have the same problem with his GI docs, every one has had a very big head on his shoulders. I've heard good reviews on this Neuro, and I'm really hoping for him to be good, b/c otherwise that means we're leaving state again for his medical care, and I honestly can't bare the thought of that. I'm soooo tired of learning hospital routines! So I guess we'll see. Yesterday James' doc said she was calling the Neuro to see how fast she can get us in, maybe we'll know by the end of the month if he's a good-guy or a bad-guy

 

[alaskanabbott]

James and I are working on his school project "Alaskan Black Bears" and we decided to put up an update.

1. Still no loaner wheelchair. The one that they brought up first was too small, not in the seat but in the legs. James is tall, he's almost 13! but he's not very wide, so the 12" chair was great in the bum, not for his heaight SO we are waiting for another to come up. They ordered him a brand new chair as his rental until his custom one is done. Please send good vibes that the rental will actually be here by the time we leave!

2. We have our plan for how we're getting to Anchorage. Hubby, me and the 15 yr old, and the twins (James and Macylea) are going up next Saturday, then grandpa will come Sunday afternoon with the youngest, Mackenzie-5 the oldest Dakota-17, and Elijah-10. Our wish group is having a dinner for us at a popular restraunt at 6pm, and we have to check into the airport at 11:30which means we'll probably be sitting in the airport for an extra 3 hours, since I can't figure out anything to do in Anchorage at 8pm on a Sunday night with 6 kids I'm thinking about asking the hotel if there is anyway we can get a really good deal on the room for a 1/2 day since we only need it until 11pm...hmmm I guess it can't hurt to ask?

3. James is feeling better now from the g-tube placement. It's still a little red and swollen, but all in all he's feeling better. He has been going to scholl from 11:30am to 3pm, and I think that helps get his mind off of things, and I get a little respite from being a caretaker, hurray for school!

4. I kind of lost the excitment of planning...I've read all the books the library has on Disney World, went to all the sites, now I think I'm just ready to DO IT! I still need to find sandals for the kids, we're all still in snow boots! but I stopped buying shorts and t-shirts, hubby started questioning the sanity of each kid having 6 pairs of shorts that they'll probably never wear again, and I had to agree I think I may make all the little kids a shirt, I'm thinking it would be fun while we're on the planes down to have matching shirts, but I'd have to drug my teen-agers to do it, and if the teen-agers won't, DH will ask why he should have too....do boys ever actually grow up?

5. I want to try to do the Pirate dinner with the family, but I don't know how to fit it in. We have only 6 days to do anything, since we get in late the first day and leave early the last. We're doing full days at WDW, Sea Wolrd, US, and Epcot, half day at AK and the kids really want to go to the beach our last day, then if we still have time after we play at the beach we thought we'd do IOA.. We're doing SW on Thurs b/c the kids are super excited about Christmas, so we figured since SW closes early, we'd make it to x-mas on time. Maybe the day we do the AK we can do the dinner? Does anyones plans ever actually turn out how you planned them?

OK that's enough for awhile back to the Alaska Black Bear report!

 

[yinyanggirls]

I'm thinking about asking the hotel if there is anyway we can get a really good deal on the room for a 1/2 day since we only need it until 11pm...hmmm I guess it can't hurt to ask?

What hotel are you staying at the first night? If it's someplace that has any kind of lobby, maybe they'd at least let you hang out there the following evening. At least they'd have chairs, a tv, etc.

I think I may make all the little kids a shirt, I'm thinking it would be fun while we're on the planes down to have matching shirts, but I'd have to drug my teen-agers to do it, and if the teen-agers won't, DH will ask why he should have too....do boys ever actually grow up?

What about making the big kids a t-shirt with just a small logo on the pocket side (like a surf t-shirt would have a logo there). Then it wouldn't be too obvious and a little more "cool".

 

[Maryrn11168]

Glad James is feeling better!! How did the Black Bear Report go?? It's amazing how much homework we have as parents!!

I'm hoping you have a good night in Anchorage. Does the hotel have an indoor pool?? If so that always kills at least an hour or so.

I love the T-shirts!! Could you tell me who did the Phinneas and Ferb disign?? My little guy loves them!! and my chapter doesn't give him a shirt, so I decided to make him one. Thanks!!

How is your other son feeling???

 

[alaskanabbott]

Glad James is feeling better!! How did the Black Bear Report go?? It's amazing how much homework we have as parents!!

I agree, whew.... glad that report is over! lol...actually, he did 99% of it, I helped him cut, and type, that's all.

I'm hoping you have a good night in Anchorage. Does the hotel have an indoor pool?? If so that always kills at least an hour or so.

I love the idea of the pool, and hanging in the lobby, I'll definately see what we can do,

I love the T-shirts!! Could you tell me who did the Phinneas and Ferb disign?? My little guy loves them!! and my chapter doesn't give him a shirt, so I decided to make him one. Thanks!!

I don't know how to send you her info, so I'm giving you the link to the thread where she sent it to me, I figure then you can PM her maybe? http://www.disboards.com/showthread.php?t=2409350

How is your other son feeling???

Elijah is great, takes more than a brain bash to slow him down!

Good luck with the shirts, it was super easy, really!

 

[Maryrn11168]

Thanks for the thread!! I actually had found your thread thru the MAW thread and requested some for him. I hope they come out as good as yours!!

 

[alaskanabbott]

Thanks for the thread!! I actually had found your thread thru the MAW thread and requested some for him. I hope they come out as good as yours!!

I loved how they looked on a shirt of a similar color as the background of the design. The only thing that didn't come out right was Phin and Ferb look a little green, since I did it on a green shirt....otherwise, so easy...take pics and share with us your handy work when your done!

 

[cantwaittoseemickey]

I hope this neuro is able to give you some answers. I understand what it is like to not have a diagnosis. While Ty does have a diagnosis of CP they feel that there is something else going on.

I love your shirts! They turned out really cute!! I hope you get his loaner wheelchair before you leave. That is nice they ordered him a new one. Your plans sound great! You are going to be a good kind of busy!!

 

[alaskanabbott]

I hope this neuro is able to give you some answers. I understand what it is like to not have a diagnosis. While Ty does have a diagnosis of CP they feel that there is something else going on.

I love your shirts! They turned out really cute!! I hope you get his loaner wheelchair before you leave. That is nice they ordered him a new one. Your plans sound great! You are going to be a good kind of busy!!

James is diagnosed with CP too, but all this new stuff started happening before they had ever done an MRI. They had always figured he fit the part, born premie, had no oxygen for 4 minutes after birth, then had encephilitis and meningitis...after that he was always moderately globaly DD, and was picture perfect for CP...so when they did his MRI last year and saw all the thinning of the white matter and the ischemic injury, they said it was from birth, though now my DR wants them to look closer and be sure it is all explained by CP and nothing new.

I got a call from the wheelchair place and she said we will deff have the chair by next Friday. I'm crossing fingers and toes she's right.
I'm sure we are going to be busy busy busy, but this is our ONE chance to do this, we will never be able to go again with all the kids, so we want to do as much as we can. I looked again at the dinner shows, and I'm thinking we're not going to have time, oh well

 

[alaskanabbott]

This is not wish trip related

We have a state wide competition called "forensics". Not what you see on CSI, it's actually about reciting poetry, or a book, or a passage from a book. There are many different catagories and each school does it. James actually won for his class and is now going on to the Borough Comp today! I'm so nervous I could be sick He won for reading the book, If you give a Pig a Pancake, and he can't see the words anymore, so he memorized it, but he still gets tripped up pretty easy. He is in pain this morning, and I'm going to just give him some Tylenol until after his recital, because if I give him his meds he'll be in lala land. I'll take some pics, wish us luck!

 

[yinyanggirls]

Good luck James!!! Great job memorizing the book!

 

[Wee Annie]

Good luck! We used to have forensics competitions in school too. Way to go James!

And glad the g-tube site is getting better. If you want any tips re how to deal with the lengthy tubing while awaiting replacement by the "button," just let me know.

 

[snowwhitesmom]

Yeah, James!!! I will be sending good thoughts!

 

[alaskanabbott]

I should have posted this sooner, but we had a big day today, my DH was baptized and we were celebrating.

James did great, soooo GREAT! He spoke up and read with lots of emotion. He annunciated each word, which can be tricky when you say something my memory, it's easy to just ramble it off. SO did he win?

YES!!! He won...can you believe it! Honestly when we started this we just picked a book he could memorize easy so he could get the grade. All 4th, 5th and 6th grade students have to do something, or they get an "f" for that assignment. When he won at his school I was sort of thinking he had gotten a "pity" win. I know that sounds horrible, but we really thought so. Then when he had to compete, I was so nervous. What a great day for James, HURRAY!

Here he is with the principal of the school he use to attend.

He was starting to get pretty tired by now, the whole thing took about 3 hours, and he was ready for a nap.
Thanks for the well wishes!

 

[yinyanggirls]

Woohoo James! Congrats on the win!!!