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Old 02-02-2011, 09:49 PM   #31
blessedmom4
WE BELIEVE IN MIRACLES! ~~Nearly twice as many children die from Congenital Heart Defects in the U.S. each year as die from all forms of childhood cancers combined.
 
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Princess Allison getting HER WISH...rambling...NOT at all, this is amazing!!! First time I have seen pictures of the HP exhibit and I am SOOOOO excited! I can't WAIT to read more!!!
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Old 02-02-2011, 09:52 PM   #32
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I Harry Potter too!! So, please- drag it out as long as possible so I can see all of it! I haven't been yet, and prob won't get to for at least a year or two- so, yes please- Pictures and everything!
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Old 02-02-2011, 10:37 PM   #33
blessedmom4
WE BELIEVE IN MIRACLES! ~~Nearly twice as many children die from Congenital Heart Defects in the U.S. each year as die from all forms of childhood cancers combined.
 
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I Harry Potter too!! So, please- drag it out as long as possible so I can see all of it! I haven't been yet, and prob won't get to for at least a year or two- so, yes please- Pictures and everything!
I AGREE!
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Old 02-02-2011, 10:48 PM   #34
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Originally Posted by xanphylus View Post
I Harry Potter too!! So, please- drag it out as long as possible so I can see all of it! I haven't been yet, and prob won't get to for at least a year or two- so, yes please- Pictures and everything!
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I AGREE!


Another person in COMPLETE agreement and there is no way your rambling. Can't wait to hear more.
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Old 02-04-2011, 07:04 PM   #35
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Aisling and I got the most amazing Pixie Dust tonight! Thank you guys so much for the cards and pictures. Completely made my day. And Aisling was so thrilled you liked her artwork

Thanks again!


Great start to your TR. Loving all the pics of Harry Potter. Can't wait to get there one day. Allison looked so happy.

Can't believe all the drama at the airport. Seriously...cranky people should NOT be in customer service LOL!
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Old 02-04-2011, 09:02 PM   #36
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WE BELIEVE IN MIRACLES! ~~Nearly twice as many children die from Congenital Heart Defects in the U.S. each year as die from all forms of childhood cancers combined.
 
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Hanging out for more when you have time
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Old 02-04-2011, 09:08 PM   #37
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Quote:
Originally Posted by tiggrsbride View Post
[COLOR="Purple"]So glad your daughter is doing better. It certainly gives a mom hope when she reads that! Do you mind telling me, what if any treatments have worked?

My daughter started on a 5-ASA (Dipentum) at diagnosis, but couldn't keep her symptoms in check. She was hospitalized for a flare, put on prednisone, which helped for a bit. Her symptoms continued so Flagyl was added, along with other meds. She was weaned off of prednisone after over a year by adding 6-MP and a probiotic, along with omeprazole. This was right when Enbrel was coming on the market. That was going to be her next med. She remained on the immunosuppresant (6-MP), probiotic and Dipentum and Omeprazole for years. As of last month, she is solely on Dipentum. Her colonoscopies show moderate inflammation from her stomach throughout her entire intestinal tract, but she *knock wood again* is not symptomatic and doing well. She repeats her upper gi-endoscopy again in April. Fingers crossed that all goes well!

How have things gone for your daughter?
Allison started on Pentasa right away with prevacid (and something else?? sorry can't think of the name) 6-MP was added next, then prednisone. Every time they tried to wean the flare ups came back. She then started to have labs coming back that were abnormal. So they had to stop that. That's when a team of GI doctors collaborated and decided Remicade was the next option for her. She has been doing treatments for 17 months. After a year she was finally able to come of the prednisone. She has been having flare-ups toward the middle of the cycle so they are giving her maybe 1 or 2 more chances. Her Endoscopy and Colonoscopy were last done in November maybe 4 days after a treatment and they still saw inflammation throughout. Her cortisol levels are low from the prednisone use, and now has to take hydrocortisone. She has chronic sinus problems that the ENT said her CT scan was one of the worst he has seen for a 12 year old girl. She is scheduled to have surgery in March. They are wondering if the infections are causing flares or if the immune system being suppressed isn't allowing her to fight it. Another what came first, the chicken or the egg situation. Glad to hear your daughter is doing so well!!
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No youre not rambling! Its great so far! Just found it and already caught up....I feel like I am there with you!
Glad you are enjoying and don't think I am rambling!!
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Originally Posted by blessedmom4 View Post
Princess Allison getting HER WISH...rambling...NOT at all, this is amazing!!! First time I have seen pictures of the HP exhibit and I am SOOOOO excited! I can't WAIT to read more!!!
Enjoy the popcorn!!
Quote:
Originally Posted by xanphylus View Post
I Harry Potter too!! So, please- drag it out as long as possible so I can see all of it! I haven't been yet, and prob won't get to for at least a year or two- so, yes please- Pictures and everything!
Hope that I can keep your interest, and you still want to go when I am done!!

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Originally Posted by blessedmom4 View Post
I AGREE!
Quote:
Originally Posted by kayrosek View Post
Another person in COMPLETE agreement and there is no way your rambling. Can't wait to hear more.

Quote:
Originally Posted by Tnkrbelle565 View Post
Aisling and I got the most amazing Pixie Dust tonight! Thank you guys so much for the cards and pictures. Completely made my day. And Aisling was so thrilled you liked her artwork

Thanks again!


Great start to your TR. Loving all the pics of Harry Potter. Can't wait to get there one day. Allison looked so happy.

Can't believe all the drama at the airport. Seriously...cranky people should NOT be in customer service LOL!
I am so glad you and Aisling like the cards and pictures! I wanted to do something special for everyone that touched our life during this time!! We truly feel blessed that complete strangers embraced our family like that! I can't wait until I can do the Big Gives!! (not sure how to sign up!) We don't think the thank yous even come close to how thankful we really are!


I seem to be having trouble getting on here long enough to type the report up and post the pictures. It seems to take so long. I promise to get day 2 done and at least start day 3 before the end of the weekend. Hope everyone has a GREAT weekend!
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Old 02-04-2011, 11:41 PM   #38
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[SIZE="4"][COLOR="Blue"]I feel like I am rambling... am I dragging this on too long???
Rambling? Heck no!! Tell us more, tell us more.... now I've got a Grease flashback!!!

To sign up for the Big Give click on the web link in my siggie. It'll bring you to the homepage so you can create an account and then they send you an email when you're completely activated. It'll be so great to have you on there. I absolutely love, love, doing Big Gives. It gives you such a warm feeling seeing the happy faces.
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Old 02-05-2011, 01:18 PM   #39
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Please.. We want all the details and pictures. Keep it up. Loving the TR. Allison looks so happy to be in HP World. I can't wait to see it tooo, even though I'm not a HP fan. Scott, Steven, and Kerri are.
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Old 02-05-2011, 01:19 PM   #40
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Originally Posted by 4monkeys View Post

ixiedust:[SIZE="3"][COLOR="Purple"]I am so glad you and Aisling like the cards and pictures! I wanted to do something special for everyone that touched our life during this time!! We truly feel blessed that complete strangers embraced our family like that! I can't wait until I can do the Big Gives!! (not sure how to sign up!) We don't think the thank yous even come close to how thankful we really are!
You can actually click the pic in the Big Give members siggies to join but here is the link http://s3.excoboard.com/DisBigGive. So fun that you want to join now!
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Old 02-05-2011, 05:53 PM   #41
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Originally Posted by smileycrissy View Post
Rambling? Heck no!! Tell us more, tell us more.... now I've got a Grease flashback!!!

To sign up for the Big Give click on the web link in my siggie. It'll bring you to the homepage so you can create an account and then they send you an email when you're completely activated. It'll be so great to have you on there. I absolutely love, love, doing Big Gives. It gives you such a warm feeling seeing the happy faces.
Quote:
Originally Posted by Mom2mitokids View Post
Please.. We want all the details and pictures. Keep it up. Loving the TR. Allison looks so happy to be in HP World. I can't wait to see it tooo, even though I'm not a HP fan. Scott, Steven, and Kerri are.
Quote:
Originally Posted by Tnkrbelle565 View Post
You can actually click the pic in the Big Give members siggies to join but here is the link http://s3.excoboard.com/DisBigGive. So fun that you want to join now!
I tried the links, and I entered my email.. and I need to wait for a confirmation email!!! Naturally it's not come yet and I have been waiting 15 minutes or so.

Hoping to get on here later to read some stuff and post more. We shall see.
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Old 02-05-2011, 07:38 PM   #42
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Loving your report I don't know how I missed it till now. The picture of the kids sleeping is the best ever. I can't wait to hear every detail of her trip
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Old 02-05-2011, 08:53 PM   #43
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Beautiful Allison's!!! Welcome to our journey

Welcome! Airtran flight attendants were very nice. And nice at Orlando. I emailed them and asked about luggage. They emailed me back that they waive MAW luggage fees. Try to email them. If it's in your ticket info, they will automatically waive it!! Good luck.. we had 6 of us too
That is awsome they waived your fees. I emailed them and explained it was a MAW trip for my daughter and they said they don't waive the fees. I wonder if I should email them again? We have 5 and I am a bit concerned about it.
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Wish Trip Dates

Feb 24-March 2, 2011
So sad it is over, but wonderful memories were made and awesome smiles and lots of happy tears!!!

Mom Dad Kaila Tilear Abby
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Old 02-06-2011, 09:02 AM   #44
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That is awsome they waived your fees. I emailed them and explained it was a MAW trip for my daughter and they said they don't waive the fees. I wonder if I should email them again? We have 5 and I am a bit concerned about it.


Remind me, I am sorry I can't remember..... are you flying Airtran out of Newport News?? They do waive the fees. I would definetly email back. If you PM me with your email address I can fwd the one that they sent me.
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Old 02-06-2011, 09:08 AM   #45
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HAPPY 16th BIRTHDAY TO MY BABY!!!




Today is my baby's birthday. It is so hard to believe that 16 years ago I had him. Time goes to fast!!!

I am making him a big breakfast and then we are taking him to a Japanese Steakhouse that he has been begging to go to!!

Luckily in the state of VA they have to be 16 and 3 months to get their license, so I have more time to prepare myself for that one!! In the mean time, he will continue to be supervised driving!!

Hope everyone enjoys their day!!
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