August 7, 2004 Magic...who's going?

[sbennett]

Amy
Good luck with the new meds...maybe it just takes time for them to build up their effectiveness. Was Nicholas on the sustained release Ritalin? Corey only had one pill to take in the morning before school that lasted 24 hours....of course it caused him to have tachycardia so that's why we had to stop it.
My A1C was 6.9...ugh. I have NO energy, somedays I could fall asleep at my computer with no problem. I find that if I eat carbs (which I onced loved, I was never a real sweets craver but give me bread or a potato and I was in heaven) it's much worse. There's no way I can ever have a bagel at home and drive to work in the morning...snooze city!! I want to get this regulated NOW, but the first appt I could get was the 25th....patience. Old age...ain't it a wonderful thing!!! Plus we're anxiously awaiting the results of my genetics testing to see if I have the cancer genes...one positive note...all three of our kids are adopted so if I do have it...at least I didn't pass it on.
Shelley

 

[luv2boys]

Nicholas is now on the sustained release 18 mg. I think it comes in a 36 mg dose that we could try. Talked to his teacher today and she can tell it is not working as well either.

 

[jeanneg]

Wow, hearing about all the health and job problems people are having makes our house selling blues seem not so bad.
Shelley: I'm with you about the carbs.......I think my most favorite food is any kind of potato! (Doreen is just rolling her eyes at that one!) I wish carbs didn't have to be so bad for us, but anyone who's diabetic or has the tendency to develope it knows all about avoiding them. I've been "watching" my carbs for about 5 years now and sometimes I just watch myself eat them! Right now I'm doing induction for South Beach so I can't have any for 2 weeks and it's been really hard. What I find works for me is that I try not to ever waste my carb allowance. In other words if it's something I really want I let myself have it, but I try very hard not to eat the ones that are calling out to me simply because they're there. Still, it's an ongoing struggle everyday.
Now, about fun things to do in Burlington..........DUH!.....I can't think of any. We drive through there whenever we visit Nikki and i know there are some outlet shops that we've never been to. I hear there's a very nice zoo in Ashboro which is not too far
away. Of course you can always come to Raleigh and visit us! What are the specific dates? We're probably taking vacation in August this year but it won't be until the very end.
Denise: good luck with the drive to/from Orlando. Is this the weekend you move Chelsea in or is she already down there?

 

[wendym]

I am very grateful that we are both healthy - we are both so lucky. I couldn't live without carbs but yes Mum hates potatoes although she will eat sweet potatoes!
OT my form class held cake and candy sales this week and we raised $2000 for the tsunami disaster appeal.
Wendy

 

[luv2boys]

We had to end up changing Nicholas' medicine again. Concerta was just not doing as well and then he started with the tachycardia. Scared him really bad. Going back to Ritalin and adding an afternoon dose. Could see the frustration and easily distraction come back that had gone away while on the Concerta.

Talk to you when I get back!

 

[EPCOTgrl1]

I AM HERE. i have my first day of work today!!! i am so excited!

 

[jeanneg]

Amy: sorry to hear the meds were not working as they should. I hope all goes well with the new ones. I know how frustrating the whole situation must be.

Chelsea: Good luck.......and have a blast!

 

[wendym]

Amy - hopefully this will work better. Chelsea enjoy the first day!!!
Wendy

 

[gometros]

Amy - I know how much changing drugs can affect someone. Best Nicholas stays with what he is comfortable with.

Chelsea - good luck and send some of that Disney Magic (and warmth) up this way).

 

[musicalSaranader]

Chelsea, have lots of fun and be sure to tell us all about your fun experiences!! (Especially those of us aspiring to do the program!)

 

[sbennett]

Please send some FL warmth this way....they're predicting a blizzard for this weekend here....possibly 1-2 feet of snow....ugh!!!! We may get 5 inches tonight. Eastern Long Island is supposed to get it the worst...we usually don't get so much but this year they all seem to be hitting us...we're about as far east as you can go..only 15 miles to the end! Don't know what they're calling for up by Sandy.

Hope the meds get straightened out Amy....been that route it's very frustrating to the patient and the family. I still have Nicholas on the prayer list at church.

Going to NC in April for my niece's shower. Courtney & I are carpooling with my sister and my brother's mother-in-law....should prove interesting.
They're also planning a surprise 50th Birthday party for my sister-in-law. Not sure if it's in the Burlington area where my niece lives or in the Edenton area where my brother & sister-in-law live.

Still waiting for my genetics testing results...should hear something by next week or so, then depending on results some major decisions will have to be made. Pray for negative results.

 

[luv2boys]

Hey everyone,

I'm back from Fort Lauderdale and despite the title of the conference, I had a great time. Left Thursday and my college roommate picked me up at the airport and had dinner together. Friday morning met with the creator and director and social worker of a worldwide support group that has been a lot of help to us and helped them get ready for the conference. Met a lot of people. Had two consults with doctors and both had the same opinion as St. Jude which made me feel better. Unfortunately, just like St. Jude, they know of no options right now other than radical surgery with significant deficits resulting if the tumor grows but they don't know about 1, 3, 5, 10 years from now. They both said to live day by day and don't look back and question any decisions I have made in the past. Got to see David perform three times, got to spend quite a bit of time with him. He even talked to Nicholas on the phone. (He is Nicholas' hero as he was the first adult Nicholas met with a brain tumor - he thought only kids had them and they did not live to be adults because he was only seeing kids at St. Jude - you can go to his website and see why he is such an inspiration. 8 years surviving the deadliest brain tumor) Also, went to a semiar with a educational psychologist and she gave me her number to call her for help with a 504 plan I have on Feb. 10. Just starting to really need this, and she was a lot of help but our time was limited.

Two things I learned:
1) When I think I have learned it all, the more I realize I don't know anything.
2) My goal is to have the best possible outcome for Nicholas, and right now we have reached that goal.

I also told the director and creator of this support group that I had this phrase pop in my head one night in the middle of the night and thought that I would get Nicholas' school to help raise money for brain tumor support. It was "Nickels for Nicholas". They fell in love with it and are wanting to do it up big. So don't be surprised if you see that sometime soon. She wants Nicholas to be very actively involved and whatever he wants he will get (he has already requested t-shirts and tattoos). When I asked him about doing it, he said they we can turn this stupid thing (the tumor) into something good. I LOVE THAT BOY!!!!

Sorry so long, just wanted to update. Got home last night to a house you would not believe and transcription work that did not get done by anybody while I was gone and I'm trying to sorta "debreif." I had a great time, but it was very emotional.

 

[wendym]

Amy
That sounds a wonderful idea and so inspirational! Please keep us updated.
Shelley - keeping our fingers crossed for you.
Just booked an Easter cruise yesterday. It would have been Mum and Dad's 50th wedding anniversary then and I want to do something. P&O (sister line of Princess) had a great deal on Adonia - 7 night cruise of the Med for £569. Inside cabin of course but it looks lovely. It's an adult only ship so that will be differnet. Finding it really difficult to find info - nothing like the DIS boards! The message board they have is so slow and cruise critics have very little on it.
Of course how am I going to cope without all of you?!
Wendy

 

[eye R.N.]

Amy sounds like you had a great time and have the perfect attitude. The best outcome day by day is all any of us could ask for. Nicholas is amazing I hope he turns "this stupid thing " into something wonderful.

Shelley hope you didn't get slammed too hard with the snow. We got off easy here only one missed day of school. Sometimes I wonder, is it better to know what is in your gene pool? Of course knowing that dad is a diabetic has helped keep me on the straight and narrow for years now. Whatever the results I know you will be guided to do what is right for you.

Chelsea, you rock child, the package is on it's way. It has just about everything you asked for and some surprises.

Wendy, you and Mum will do fine on a cruise without us. Andy has asked me about three different times when you will be in flordia, so don't be suprised if you have us sleeping on your floor. We would sleep on Chelsea's but she is not allowed overnight visitors. Congrats on your students fund raising ability, they must be a special group.

We will be in Disney over easter, can only go so long without seeing the daughter. Besides, I know it is unbelievable but we never made it into a park this last trip. The best we could do was Fantasia golf (which was a hoot btw)

 

[sbennett]

Amy,
Any info you have on "Nickles for Nicholas" could you forward to us. Maybe our kids can get their classes at school or Sunday School to collect for him.
What type of tumor is it and where is it located?

Went to endocrinologist today...prescribed Glucophage and testing twice a day. Ordered additional tests as well....ugh!

Wendy...I envy you for your upcoming Easter Cruise...enjoy it!

Thanks Denise for your encouragment, say hi to Chelsea for us, hope she's enjoying her internship.

Shelley

 

[luv2boys]

Nicholas has a craniopharyngioma that is adhered to the hypothalamus which is why it cannot be removed. It is in the optic nerve, pituitary, hypothalamus region. Actually, he now has no pituitary stalk at all so he is on the hormone replacements because of that.


I've never seen this guy before. He's cute.

 

[wendym]

I love that smilie too!
Shelley I am sure the testing will become routine and we keep you in our prayers with the other tests. Amy, let me know details about the fundraising also.
Denise - no way would we let you sleep on the floor. I will have a 2 bed roomed timeshare for the 2 weeks (well I will once I get it booked!) Spending 2 nights at Pop from the 30th June and then check into Westgate Lakes from the 2nd July - 16th july. We would be delighted to see you all again - and that goes for all of you!
Wendy

 

[luv2boys]

"Nickels for Nicholas" is a GO!! Will let you know when some of the details are worked out

 

[wendym]

How wonderful - I bet he is so excited!

 

[eye R.N.]

Go for the best testing meter you can find. The arm ones are much easier than the ones that require finger testing.

Yipee for Nickles for Nicholas , let us know the details!