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Old 06-30-2010, 03:56 PM   #1
J'sMum
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J's Wish Trip Dream Factory/GKTW October 1st-7th 2010

Hi, Not sure where or how to begin here. I started out with curiousity about gktw and stumbled my way upon these forums. I will start by saying thank you to those of you who have shared your stories and inspired me to write a bit about mine.

I'll start out with who we are:
There is ME: Mum - My DH - My DD (17) and my DS (14) Dream Factory Wish Kiddo
well we have had some pretty bumpy roads along the way, my daughter was always our very ill one, she has had pnumonia countless number of times starting with her first round at 5 months old, and she's had it at least once every year since sometimes multiple times despite having pnumonia shot. she has Asthma and arthritis and a hollow bone in her knee and IBS. and she is not the wish child !
My son was always colic as a baby, had an umbilical hernia also as a baby that never went away but despite that he seemed very healthy. until at nearly a year old he was anemic. Now my dr blamed me for this and gave me all sorts of information on "food pyramid" etc etc etc it's always interesting when you are a young mother how easily you are dismissed. and I have to add the fact that i nursed my son for 2 years, and obviously gave him food at the proper steps. and what my Dr did not realize is i had chosen to take parenting classes several years prior to having my son. ( NOthing like turning a short story long is there) ok back to my son.
This went on for several years my son being anemic then not anemic roller coaster.. he grew at a slower rate then my daughter but was very smart so i presumed he was just going to be my lil guy.. then at about 7ish he sorta quit growing now mind you in all this i am dealing with my daughters illnesses and sicknesses so i had not fully become aware that he was not growing fast enough. well in that time frame my son was hit by a car (seperate long story) and that sent things rolling in a different direction.
OK now my son is past the car accident finally and things seem to be once again getting better and at about my sons 10th birthday it hit me.. He is Tiny ! amazing how on a particular day you notice something that has been right before you. he was so small at age 10 that i could hold him up on my hip comfortably. well i took him for a 2nd physical that year and again he was anemic
I started giving him 2 vitamins vs 1 per day and making sure he had the breakfast protein drinks along with his regular breakfast jussst in case i was missing something as Dr's were saying it was something i was doing yet again. a couple months later he had lost some serious weight and begun looking pale this was at the end of july of his 10th year at this point. we started taking him to the dr's weekly asking dr after dr what was wrong. they would just shrug it off say he was ok and send us on our way. few weeks later the bleeding began or when my son finally come to me and asked me if blood was normal ... off to dr's that same day .. Dr says oh well maybe e-coli... son now starts to sleep constantly and is becoming paler and paler, a few more months pass and still taking him to the dr's weekly watching him cry in pain he could no longer walk as his ankles hurt dr's said nothing was wrong.. well long story short Christmas Eve was here.. now any kiddo is excited on xmas eve
not my son
he was tired and seriously looked like he was from another dimension. the color of him was there is only one way i can describe it and if i try it will just get me crying so i wont even try, its just not a good feeling seeing your child that small and that pale and not care that its christmas cause he is fighting to survive( i just didnt know how much he was fighting).
family kept saying "oh his father was always pale too" yadda yadda well day after christmas i took him back up to the dr's this time i meet new dr that is still in training. so i am iffy about her
i finally look at her and ask 1 simple question can you please tell me why my son is anemic? WELL bang.. she looked at me i looked at her course i am in tears at this point cause now i am having to carry my son everywhere he goes he simply cant walk.. she says i want you to go for blood work and i'll see you in a couple days.. my son and i get home after blood work i no more then had just taken his jacket off and boom she wanted to send an ambulance.. hemoglobin was down to almost 4 just under 4 now this was foreign to me i did not know what this meant... but i drove my son cause it is faster then waiting for an ambulance Blood transfusion time.. and thats when life again begun to change... ok so he is admitted finally for testing and dr's are looking at me like i am a horrible woman for letting my son get so ill , i even heard one say something about me out in hallway as i stood in room looking at my son getting someone elses blood .. dont get me wrong i am greatful for the donation and i do donate blood but i was oddly angry that someone elses blood was running into my sons veins when it should be mine.. course when i finally went home to see my daughter for awhile i decided to google up everyone of my sons symptoms and it come up to 2 conclusions .. Leukimia or Crohn's.. BOTH Scared me so it become a waiting game took 1.5 montsh to finally diagnose him and he did in fact have Crohn's disease. his gets so severe that he gets the ulcers inside his mouth in esophagus all thru entire digestive system hios colon already looks black in areas and has several spots dr's could not even get to with a scope. he also gets the ulcers on top of his head and gets a rare crohns rash all over his arms n legs when he is having a severe flareup. with this Crohns he has arthritis .. gets migrains and easily tires.. well this has started a long road of every 6 to 8 weeks he goes in for infusions and takes a slew of drugs in the morning just to try and avoid a flare up. can have no whole grains .. only white breads no fresh fruits and veggies unless its a melon with no seeds.. the list goes on and on .. easily summed up.. If its good for you its bad for him. Even though i was feeding him correctly whole grains plenty of fruits and veggies etc etc for him all those years i was feeding him incorrectly.. so In short Crohn's disease .. before my son was diagnosed i had never heard of it now i wish i never had. there is more to the whole Crohn's than i have listed here as far as complications can go but as far as letting you all know why J' is so in need of this trip and his sister too this would be why... EEgads a book sorry all and sorry for all the typos !!!! and after this background i can start telling more about the Upcoming trip !! something positive finally :D

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Old 06-30-2010, 10:11 PM   #2
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Hello! It sounds like both your kiddos- and you- could use a great vacation! I don't know much about Crohn's, but I knew someone with it- and he wasn't a big fan of it either! Your son must be trooper to deal with all that stuff. Hopefully your trip will make you all so happy, you can forget about it all, just for a little while!
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Old 07-01-2010, 02:16 PM   #3
J'sMum
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Originally Posted by xanphylus View Post
Hello! It sounds like both your kiddos- and you- could use a great vacation! I don't know much about Crohn's, but I knew someone with it- and he wasn't a big fan of it either! Your son must be trooper to deal with all that stuff. Hopefully your trip will make you all so happy, you can forget about it all, just for a little while!
Thank you for the welcome and wow I was writing that opening last night shortly after getting home from the hospital with my son for his Infusion.. Next time I will wait a day so I can stay more positive hehe !
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PreTrip Report for J' http://www.disboards.com/showthread.php?t=2499099

Trip Report for J' http://www.disboards.com/showthread....1#post38619970
Dance to the petals on the streams running down,
they're there for you singing, just to lose that frown.
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Old 07-01-2010, 02:49 PM   #4
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Now that we know why J' could use a break and have the chance to be a kiddo again, I guess the next thing would be how did it come about?

About a year after J' was diagnosed and I started to see the effects it was having on him and his sister and the amount of time the two of them had spent in hospitals and just simply indoors due to many reasons .. if it was snowy or rainy thier arthritis seem to hurt more or they needed to stay within close range of bathroom or they were tired.. This all seemed to be the norm It hit me that all the fun had dissappeared Laughs seemed to be failing and i was simply scared for my kids mental well being.
I mentioned this to a friend of mine who then in turned started calling around on behalf of my kiddos who then gave me the number to the Dream Factory. Now I am very shy in person or on the phone. I can write a mile a minute but it does take alot for me to reach out in person. Well i will do anything I can to make my children happy so I worked up the nerve to call. I spoke with the most wonderful woman who was so kind and patient and listened to everything I had to say. She then started asking me some very basic screening questions to see if we qualified for my son and she said without a shadow of a doubt he would qualify for a wish.
This was almost 3 years ago. Unfortunatly life took another oddball turn. and trying for a wish at that point in time was not the right time for my son as he had already told me what he would want if he was ever given the chance. we all know by now what that is .. Disney rides ! any rides. TBH I think my son would have been happy if they had simply said they would give him 1 day anyplace that had a ride.

Several months ago the woman I had originally spoke to called me to ask what happened with the application (I had never sent it back which again has to do with another long story) I was shocked that someone had remembered that conversation from so long ago and was even wondering. I was scared at this point to even turn an application in because it had been such a long period of time but, she went ahead sent me a new application as information I filled out on original one that I filed in back of my filing cabinet had changed. So application in hand Dr's signatures in hand and a wonderful letter from the Dr as well. as soon as she found out what we were trying to do for J' she decided to write a letter.

A few weeks ago they called and let me know they had someone who was going to work with us to figure out j's dream and get the ball rolling.

What wonderful people they are , 2 people come to the house from the organization and sat with my son and I. They not only talked about the dream, but my son, also very shy; who I half expected not to even talk opened up and talked to them as tho he had known them for sometime. I found I even began to ramble on like I do when I start writing.. RARE

They told my son that very day the wish that he wanted "family vacation to disney" would happen 100% and they even sat with him to show him pictures of GKTW which i am greatful for because that very evening my son started to run fevers of 105+ which ultimatly turned out to be a new flare up of his Crohns Disease.. Goodbye remission but we will get him back there again

Thats where we stand now. we have been picking dates and looking at flight options since dates we have picked ! now just finding the right flight and from there I am lost as what we are suppose to do.. But we will go with the flow and just see what happens

My DH , DD and DS (wish kiddo) has never been on a vacation together. not even a short one within our own state. In fact we have never even had a Family picture done with the 4 of us. Last family picture taken was for my DH and I's highschool graduation our daughter was 1yrs old at that point in time. Since then no others. I do not yet own a camera but am hoping too try and get one prior to trip so for now while i am doing this pretrip report pics will be limited. I have no current ones available but i do have one of DD and DS together that I will ultimatly share as son as i go back and read post #2 on that one thread TY Maroo for pointing me in the right direction if you happen to end up reading this


OOO 2nd book i better quit writing !!
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PreTrip Report for J' http://www.disboards.com/showthread.php?t=2499099

Trip Report for J' http://www.disboards.com/showthread....1#post38619970
Dance to the petals on the streams running down,
they're there for you singing, just to lose that frown.
Dance from the song you feel beat within your heart,
it beats within you naturally loving from the start.
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Old 07-01-2010, 03:31 PM   #5
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Wow! You guys have been through the ringer.

I am also planning a short trip to Disney in October, so maybe we will be there around the same time?
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Old 07-01-2010, 06:04 PM   #6
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Hi welcome! I am so sorry your son and your daughter has gone through so much and it too so long to get his diagnosis. I am subbing to your thread and sending you all big hugs!
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Old 07-01-2010, 09:09 PM   #7
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Originally Posted by maroo View Post
Wow! You guys have been through the ringer.

I am also planning a short trip to Disney in October, so maybe we will be there around the same time?
well hugss back and ty ! Looks like we will be there oct 16 - 22nd Just waiting for plane tickets confirmation on that now GKTW said those dates were available
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who: me DH DS(wish kiddo) 14 DD 17
PreTrip Report for J' http://www.disboards.com/showthread.php?t=2499099

Trip Report for J' http://www.disboards.com/showthread....1#post38619970
Dance to the petals on the streams running down,
they're there for you singing, just to lose that frown.
Dance from the song you feel beat within your heart,
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Old 07-12-2010, 06:28 PM   #8
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Quote:
Originally Posted by J'sMum View Post
Hi, Not sure where or how to begin here. I started out with curiousity about gktw and stumbled my way upon these forums. I will start by saying thank you to those of you who have shared your stories and inspired me to write a bit about mine.

I'll start out with who we are:
There is ME: Mum - My DH - My DD (17) and my DS (14) Dream Factory Wish Kiddo
well we have had some pretty bumpy roads along the way, my daughter was always our very ill one, she has had pnumonia countless number of times starting with her first round at 5 months old, and she's had it at least once every year since sometimes multiple times despite having pnumonia shot. she has Asthma and arthritis and a hollow bone in her knee and IBS. and she is not the wish child !
My son was always colic as a baby, had an umbilical hernia also as a baby that never went away but despite that he seemed very healthy. until at nearly a year old he was anemic. Now my dr blamed me for this and gave me all sorts of information on "food pyramid" etc etc etc it's always interesting when you are a young mother how easily you are dismissed. and I have to add the fact that i nursed my son for 2 years, and obviously gave him food at the proper steps. and what my Dr did not realize is i had chosen to take parenting classes several years prior to having my son. ( NOthing like turning a short story long is there) ok back to my son.
This went on for several years my son being anemic then not anemic roller coaster.. he grew at a slower rate then my daughter but was very smart so i presumed he was just going to be my lil guy.. then at about 7ish he sorta quit growing now mind you in all this i am dealing with my daughters illnesses and sicknesses so i had not fully become aware that he was not growing fast enough. well in that time frame my son was hit by a car (seperate long story) and that sent things rolling in a different direction.
OK now my son is past the car accident finally and things seem to be once again getting better and at about my sons 10th birthday it hit me.. He is Tiny ! amazing how on a particular day you notice something that has been right before you. he was so small at age 10 that i could hold him up on my hip comfortably. well i took him for a 2nd physical that year and again he was anemic
I started giving him 2 vitamins vs 1 per day and making sure he had the breakfast protein drinks along with his regular breakfast jussst in case i was missing something as Dr's were saying it was something i was doing yet again. a couple months later he had lost some serious weight and begun looking pale this was at the end of july of his 10th year at this point. we started taking him to the dr's weekly asking dr after dr what was wrong. they would just shrug it off say he was ok and send us on our way. few weeks later the bleeding began or when my son finally come to me and asked me if blood was normal ... off to dr's that same day .. Dr says oh well maybe e-coli... son now starts to sleep constantly and is becoming paler and paler, a few more months pass and still taking him to the dr's weekly watching him cry in pain he could no longer walk as his ankles hurt dr's said nothing was wrong.. well long story short Christmas Eve was here.. now any kiddo is excited on xmas eve
not my son
he was tired and seriously looked like he was from another dimension. the color of him was there is only one way i can describe it and if i try it will just get me crying so i wont even try, its just not a good feeling seeing your child that small and that pale and not care that its christmas cause he is fighting to survive( i just didnt know how much he was fighting).
family kept saying "oh his father was always pale too" yadda yadda well day after christmas i took him back up to the dr's this time i meet new dr that is still in training. so i am iffy about her
i finally look at her and ask 1 simple question can you please tell me why my son is anemic? WELL bang.. she looked at me i looked at her course i am in tears at this point cause now i am having to carry my son everywhere he goes he simply cant walk.. she says i want you to go for blood work and i'll see you in a couple days.. my son and i get home after blood work i no more then had just taken his jacket off and boom she wanted to send an ambulance.. hemoglobin was down to almost 4 just under 4 now this was foreign to me i did not know what this meant... but i drove my son cause it is faster then waiting for an ambulance Blood transfusion time.. and thats when life again begun to change... ok so he is admitted finally for testing and dr's are looking at me like i am a horrible woman for letting my son get so ill , i even heard one say something about me out in hallway as i stood in room looking at my son getting someone elses blood .. dont get me wrong i am greatful for the donation and i do donate blood but i was oddly angry that someone elses blood was running into my sons veins when it should be mine.. course when i finally went home to see my daughter for awhile i decided to google up everyone of my sons symptoms and it come up to 2 conclusions .. Leukimia or Crohn's.. BOTH Scared me so it become a waiting game took 1.5 montsh to finally diagnose him and he did in fact have Crohn's disease. his gets so severe that he gets the ulcers inside his mouth in esophagus all thru entire digestive system hios colon already looks black in areas and has several spots dr's could not even get to with a scope. he also gets the ulcers on top of his head and gets a rare crohns rash all over his arms n legs when he is having a severe flareup. with this Crohns he has arthritis .. gets migrains and easily tires.. well this has started a long road of every 6 to 8 weeks he goes in for infusions and takes a slew of drugs in the morning just to try and avoid a flare up. can have no whole grains .. only white breads no fresh fruits and veggies unless its a melon with no seeds.. the list goes on and on .. easily summed up.. If its good for you its bad for him. Even though i was feeding him correctly whole grains plenty of fruits and veggies etc etc for him all those years i was feeding him incorrectly.. so In short Crohn's disease .. before my son was diagnosed i had never heard of it now i wish i never had. there is more to the whole Crohn's than i have listed here as far as complications can go but as far as letting you all know why J' is so in need of this trip and his sister too this would be why... EEgads a book sorry all and sorry for all the typos !!!! and after this background i can start telling more about the Upcoming trip !! something positive finally :D

On my under my moms name. Don't have one of my own.
Just read a little about your story and what your daughter has gone through and is still going through caught my attention. My daughter (7 years old) has had numerous hospital stays due to pneumonia. She has low bone density, asthma and osteoperosis. Along with dermatology problems which cause major skin infections. She was tested for Job's Syndrome, which is an immune dificiency. It is only done at John Hopkins in Maryland and your doctor has to order the test, however they can do a blood draw to check the IGG levels to get a good idea if Job's Syndrome is present. Just thought I would share this info with you. They have started my daughter on a new medicine that is supposed to help her not get the pneumonia as much. We won't know anything until this fall however. Hope you enjoy your trip and we may be there when you are. We are waiting for our Special Wish dates.
Tammy
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Old 07-13-2010, 12:37 PM   #9
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On my under my moms name. Don't have one of my own.
Just read a little about your story and what your daughter has gone through and is still going through caught my attention. My daughter (7 years old) has had numerous hospital stays due to pneumonia. She has low bone density, asthma and osteoperosis. Along with dermatology problems which cause major skin infections. She was tested for Job's Syndrome, which is an immune dificiency. It is only done at John Hopkins in Maryland and your doctor has to order the test, however they can do a blood draw to check the IGG levels to get a good idea if Job's Syndrome is present. Just thought I would share this info with you. They have started my daughter on a new medicine that is supposed to help her not get the pneumonia as much. We won't know anything until this fall however. Hope you enjoy your trip and we may be there when you are. We are waiting for our Special Wish dates.
Tammy
Thanks for writing, thats soo interesting We have had DD tested for everything under the sun but i have never heard of that, i might ask dr about it just to rule it out. I know summer times she is at her best both of the kids tend to be at thier best health during summer despite all thier allergies

I know my son doesnt seem to be doing as well as he could be atm , my guess is his remicade did not take so I am crossing my fingers his next treatment will go better which will be at the end of this month
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PreTrip Report for J' http://www.disboards.com/showthread.php?t=2499099

Trip Report for J' http://www.disboards.com/showthread....1#post38619970
Dance to the petals on the streams running down,
they're there for you singing, just to lose that frown.
Dance from the song you feel beat within your heart,
it beats within you naturally loving from the start.
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Old 07-13-2010, 03:39 PM   #10
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Thanks for writing, thats soo interesting We have had DD tested for everything under the sun but i have never heard of that, i might ask dr about it just to rule it out. I know summer times she is at her best both of the kids tend to be at thier best health during summer despite all thier allergies

I know my son doesnt seem to be doing as well as he could be atm , my guess is his remicade did not take so I am crossing my fingers his next treatment will go better which will be at the end of this month
Jobs is also known as hyper IGE levels. Has she ever had her IGE levels checked? Madison is the youngest person known to have jobs. We are being sent to John Hopkins in Maryland to see a doctor that specializes in Jobs. We have been told that she is now in the life threatening stage, which is how we qualified for this trip.
i hope your son gets to feeling better.
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Old 07-15-2010, 05:39 AM   #11
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Jobs is also known as hyper IGE levels. Has she ever had her IGE levels checked? Madison is the youngest person known to have jobs. We are being sent to John Hopkins in Maryland to see a doctor that specializes in Jobs. We have been told that she is now in the life threatening stage, which is how we qualified for this trip.
i hope your son gets to feeling better.
Thanks for the well wishes for my son and you know, I am not sure if she has ever had her IGE levels done tbh. She has her annual physical coming up and I figured I could ask DR then, see we have student dr's It's a learning facility which has its pro's n cons as does anyplace. However, I have learned over the years to ask tons of questions vs just wonder. I;m so sorry your daughter is in the life threatening stage, I pray she holds steady and Dr's can help sustain. It will be so exciting to finally have a DR free week tho won't it? Not the way i would have ever planned my first family vacation (going to disney due to ill kiddo) But I will be forever greatful for the opportunity the excitement alone of talking about what we will see what we will do has been a definate mood lifter
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PreTrip Report for J' http://www.disboards.com/showthread.php?t=2499099

Trip Report for J' http://www.disboards.com/showthread....1#post38619970
Dance to the petals on the streams running down,
they're there for you singing, just to lose that frown.
Dance from the song you feel beat within your heart,
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Old 07-15-2010, 05:59 AM   #12
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Well, seeing as this all seemed to be so to good to be true for my son and our family, I started to over think everything soo I emailed my sons wish granter coordinater not sure what we call her , Our Dream Maker and she let me know we will not know our flight times until sometime in September where James was chosen for the american airlines wish flight. she said it is a done deal I will still feel better when I see something on paper silly huh? However knowing that its a 100% go for Oct 1 - 7th my DD Katelynn has decided we must start the planning. Since we do not know when flight times will be until sept we have decided to exclude the
1st and exclude the 7th (fly in and out days) in the planning process and if we have time to do something on those days it will be a bonus
so my questions out there to anyone reading this is;

Is harry potter section a whole day event or a 1/2 day? my son will only do a ride at most twice and if its super fast, the fastest/roughest coasters he will not even do those ones and from reading trip reports getting into the stores will almost be impossible in harry potter

does anyone know if you can leave a park 1/2 day go back to gktw for lunch/break and then go back to the park on the same ticket?
we will not be bringing any personal money however we was told we would get a lil bit of money for souvineers or a dinner whichever we chose to do and I know my kiddos they will want souvineers they might be 14 and 17 but they are young in many ways. so we will skip adr's

If you do not sit thru a show at seaworld and go to more or less look at the sharks and maybe penguins etc would that be 1/2 day ? I know my DS mentioned it would be cool to walk through the shark tunnel like you see on tv

I also have a question about GKTW, both of my kiddos eat about every 2 to 3 hours small meals are you only allowed 1 dinner 1 lunch 1 supper? trying to figure out if i should budget some money to go grocery shopping while there

Its amazing how many what if questions I have LOL but for now these are the ones on mind most
Thanks
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who: me DH DS(wish kiddo) 14 DD 17
PreTrip Report for J' http://www.disboards.com/showthread.php?t=2499099

Trip Report for J' http://www.disboards.com/showthread....1#post38619970
Dance to the petals on the streams running down,
they're there for you singing, just to lose that frown.
Dance from the song you feel beat within your heart,
it beats within you naturally loving from the start.
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Old 08-02-2010, 03:58 PM   #13
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Wow, I can't believe you had so many doctors blow you off for so long. That's insane.

When our daughter was born, she went straight to the local neonatal ICU. It took a couple of weeks for us to recognize the seizures she was having, another couple to convince a nurse, and yet another couple for us and the nurse to get a doctor to listen! We quickly found, as you seem to have, that the newest, youngest, most inexperienced doctors are often the best ones to have on your side. When we are inpatient I am always grateful that CCHMC is a teaching hospital and we get residents to work with. They listen, they will admit they don't have an answer and will work to get the answer. Senior attendings often just go through their routines and condescend to you. After 11 years of frequent flyer miles to that same floor though, we have a reputation. No one pokes these bears anymore.

At any rate, glad you got some answers. Once you know what battle you are fighting you can focus on it and be more effective.

I'll read up on your PTR a bit later, but in the meantime welcome and enjoy the ride!
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Old 08-03-2010, 09:54 AM   #14
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Quote:
Originally Posted by balloondoggle View Post
Wow, I can't believe you had so many doctors blow you off for so long. That's insane.

When our daughter was born, she went straight to the local neonatal ICU. It took a couple of weeks for us to recognize the seizures she was having, another couple to convince a nurse, and yet another couple for us and the nurse to get a doctor to listen! We quickly found, as you seem to have, that the newest, youngest, most inexperienced doctors are often the best ones to have on your side. When we are inpatient I am always grateful that CCHMC is a teaching hospital and we get residents to work with. They listen, they will admit they don't have an answer and will work to get the answer. Senior attendings often just go through their routines and condescend to you. After 11 years of frequent flyer miles to that same floor though, we have a reputation. No one pokes these bears anymore.

At any rate, glad you got some answers. Once you know what battle you are fighting you can focus on it and be more effective.

I'll read up on your PTR a bit later, but in the meantime welcome and enjoy the ride!
Thanks for coming by and yes the new Dr's are soo wonderful and the one partic DR that finally listened to me has now since finished her clinical and is no longer a student but she still on her own time checks on James they formed a bond as my son knows she ultimatly saved him and he was her first serious patient that she made a difference to. I have had so many tell me they would not want an inexperienced DR, and I;'m with you on the idea i love a learning facility you have the experienced dr over seeing but you have the younger ones who want to be cautious more open to listening which gives you a better chance in the long run
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Old 09-26-2010, 10:40 AM   #15
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SO sorry that your family has been through so much. I completely understand what it is to know that something is wrong with your child and have Drs. not believe you. Fortunately for you and for my son, it wasn't an instant death sentence, but quite nearly.

So, glad that your family is getting this opportunity!
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