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Old 08-12-2010, 07:50 PM   #136
Mom2mitokids
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Well I was thinking I would be quiet for a spell on J's PTR due to fact that the majority of trip is planned out so that we can leave room to "go with the flow" But NOPE ! We have been chosen for the Big Give also I am so humbled and honored and amazed at how all of you do this. I am thankful for the pixie dust that you are all sharing. I want to thank all of you on the boards for being so welcoming and wonderful and making the planning of this trip amazing. This trip for my son has me in awe in so many directions. The generosity of so many strangers , from the Dream Factory to here on the disboards and more is so so wonderful. Just about the time we all began to lose faith in so much while so much was going wrong this Trip comes along and I was led to everyone here. Its just so amazing to have something to look forward to , smile about , get excited about ! Kids are smiling again and laughing more!! I'll stop now before I write another novel here
I'm so happy for you guys I can't wait to see all the cool stuff.
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Old 08-12-2010, 09:11 PM   #137
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WAHOO!!!! I was hoping you would get picked!!! Congrats!! It will be great fun for the kiddos and you too! It will be lots of fun waiting for the mail to get to your house everyday. I love it when there is something actually good in the mail. Rarely happens in this house- bleh- it's always bills.... But hooray!! Now it will pass the time until your trip even faster! Better get a camera so you take pics of those excited, happy and cute faces!
TY !! soooo exciting
I know what you mean about the mail.. One plus we live in what they call a village so we have no home mail delivery we all have to go to the teeny post office down the street.. makes it so if I am having a rough day.. skip mail that day

I'm a trying, If not I will find a way maybe my DH's mum will allow me to borrow hers again (camera)

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Same here! I was watching for this one! definitely get the info back to them quickly! It will be so much fun for everyone!

Lynn
Oh I will try to get that back asap, I just wanted to ask sons coordinater permission to give her phone number prior to doing so so as soon as she says form will be in

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Glad to hear everything went well. I kepted looking for updates yesterday.
Thanks so much, you know it's always heartwarming and comforting to know others are thinking of you as well, feel a bit less lonely as we all know here
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Old 08-13-2010, 09:30 AM   #138
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Well I was thinking I would be quiet for a spell on J's PTR due to fact that the majority of trip is planned out so that we can leave room to "go with the flow" But NOPE ! We have been chosen for the Big Give also I am so humbled and honored and amazed at how all of you do this. I am thankful for the pixie dust that you are all sharing. I want to thank all of you on the boards for being so welcoming and wonderful and making the planning of this trip amazing. This trip for my son has me in awe in so many directions. The generosity of so many strangers , from the Dream Factory to here on the disboards and more is so so wonderful. Just about the time we all began to lose faith in so much while so much was going wrong this Trip comes along and I was led to everyone here. Its just so amazing to have something to look forward to , smile about , get excited about ! Kids are smiling again and laughing more!! I'll stop now before I write another novel here
Just stopping in to say hi. I am looking forward to seeing the pixie dust flying your way.
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Old 08-13-2010, 10:12 AM   #139
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So glad to hear his treatment went well and you were able to leave a little earlier Congratulations on being picked for the Big Give!! They are such an awsome group of angels. The smiles they put on Ty's face is something we will never ever forget. I look forward to seeing those smiles on J!!
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Old 08-14-2010, 07:19 AM   #140
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Originally Posted by snubie View Post
Just stopping in to say hi. I am looking forward to seeing the pixie dust flying your way.
Thank you !
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Originally Posted by cantwaittoseemickey View Post
So glad to hear his treatment went well and you were able to leave a little earlier Congratulations on being picked for the Big Give!! They are such an awsome group of angels. The smiles they put on Ty's face is something we will never ever forget. I look forward to seeing those smiles on J!!

TY also, I have loved your PTR and TR and I have started to notice there are alot more angels out there than I realized. From my sons wish coordinater, to the disboards (all the families sharing) Maroo !!! what a help she is!!! to the Big give family and to just some random people along the way. Very heart warming overwhelming and amazing.
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Dance to the petals on the streams running down,
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Dance from the song you feel beat within your heart,
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Old 08-14-2010, 08:41 AM   #141
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I am totally new here, have been a non registered lurker for a long time I just had to make my first post this one.

I hope J has an AMAZING time and you get to relax as a family and forget everything for a while you deserve it.

We are planning a trip in Dec and our 3 yr old son has been having health "issues" for 6 months now, 3 hospitalizations in that time. Our latest visit to the children's hospital in our journey to figure out what's going on has us now looking at either severe Crohn's Disease with Arthritis or a rare Cancer. Sound familiar? Your son's story reads so much like our son's.

I came looking for some info on Crohn's and to see how we might help our son enjoy WDW. I'm so glad I found your trip report I can't wait see all the magic.
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Old 08-14-2010, 07:22 PM   #142
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I am totally new here, have been a non registered lurker for a long time I just had to make my first post this one.

I hope J has an AMAZING time and you get to relax as a family and forget everything for a while you deserve it.

We are planning a trip in Dec and our 3 yr old son has been having health "issues" for 6 months now, 3 hospitalizations in that time. Our latest visit to the children's hospital in our journey to figure out what's going on has us now looking at either severe Crohn's Disease with Arthritis or a rare Cancer. Sound familiar? Your son's story reads so much like our son's.

I came looking for some info on Crohn's and to see how we might help our son enjoy WDW. I'm so glad I found your trip report I can't wait see all the magic.
Oh wow I am honored you chose us for your first posting and How exciting that you will be going to Disney, Is this trip going to be a wish trip or a family trip?
I am so sorry that you have to endure this trial of waiting for Dr's to figure out what is wrong, My only thoughts on that is sooner they find out what is wrong the sooner they can treat. Has your son been to a hemotologist yet? They can help determine if there might be cancer in his system. Prior to knowing what J was facing the Dr's had us drive 2 hours to one, never told us it was also the Children's Cancer Center YIKES but it did turn out to be good news, was not cancer. Some cancers would almost be better then crohns as they can be treated and cured, Crohns is there for life and it is ever changing so there is pro's and cons as to which it ends up being, No matter which it turns out Try and stay positive, it helps with either case.

You can ask me anything on Crohn's and if I have an answer I will be Very willing to share info. Once you have enough posts if you want my e-mail address I would be happy to share what information I do come across. My son is in several study groups for different research companies so we tend to get quite a bit of information. one even pays my son 20.00 every 6 months for 20 years because they do not know what the effects of the drugs will be longterm in children. There is even a great Crohn's cookbook out there that they will send for free ! What a huge help that was. As with any disease there are often several variances and severity's and it does become trial and error. Also if your child seems very similar to J's case consider seeing a gastroentologist if you have not already and preferably a pediatrics one as the adult ones often forget to take consideration for the differences in growth etc. Thankfully my son has an excellent Dr. I am not fond of her personally nor is she me, but when it comes to the care of my child she is the best and I would not move him from her for anything.
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Dance to the petals on the streams running down,
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Dance from the song you feel beat within your heart,
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Old 08-15-2010, 10:23 AM   #143
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Thanks for the warm welcome.

Our trip is a family trip we are going to be celebrating his 4th birthday on the trip, it is our first trip to Disney, we booked it just before all of his health issues started. Needless to say we are REALLY looking forward to it.

His last admission was at the Children's Hospital closest to us, it's one of the best where we live. We were in for a week and we saw rheumatoid Dr's, hematologist/oncologist, ophthalmology, Infectious Disease, and general pediatrics. He's had a whole work up and test after test, including a PET Scan.

Apparently he's a hard nut to crack but I think they are feeling they are getting more to the bottom of it now. They have ruled out leukemia, they are still not 100% sure about the possibility of lymphoma (a rare form) but are feeling a little more sure that it's not after his ultrasound. They ruled out Neuroblastoma also with the PET Scan. We have a referral to Oncology again as they want him to be seen now that he has had even more of a work up. You know Dr.s no one wants to say "it's not _____" only to have it turn out to be _______. So while he was more confident it probably isn't Cancer he said "if it is Cancer it's a slow progressing one and we would be taking the wait and see approach with it anyway."

That Dr., at our latest appointment, seemed pretty confident it was Crohn's or some other GI issue, but really emphasized Crohn's and went over some of the details of it with us. I have to say it's the only possibility so far that really answers all of his symptoms, the others answered a couple symptoms but didn't explain others. Like no one has been able to account for his lack of growth and his severe anemia. Anyway we do have a referral to a Gastroentologist at the children's hospital so we are looking forward to that appointment.

We are really trying to stay positive. We actually are feeling much better since our last appointment, as weird as it sounds the prospect of just possibly having an answer is relieving. We really just want to know what's going on and whatever it is we will deal with it. Our daughter has special needs so we are not strangers to this. Some way to help him with the extreme ups and downs he is having would be so nice. Honestly we already kind of expected that whatever this is would be something that we would be dealing with for a long time and something difficult so we were prepared for that prospect.

I've been on the Crohn's & Colitis foundation website and gave my info for a welcome kit. Thank you so much for your help and I would love to chat more when I have more posts. I do have one question how do you deal with school and informing the teachers? Our son starts J/K in Sept and we are trying to figure out how to go about telling them about his symptoms.

I can't wait to hear all about your trip and follow along.
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Old 08-15-2010, 05:52 PM   #144
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I do have one question how do you deal with school and informing the teachers? Our son starts J/K in Sept and we are trying to figure out how to go about telling them about his symptoms.
Hiya again,

and I can definatly give advice as far as this goes if you are located in the United States.

There is a thing called a 504 plan that you can have set up for your children,
I say children because you mentioned your other kiddo has some issues as well? I have both my son and my daughter on 504 plans with the school.
A 504 plan is a certain section in the americans with disabilities act.

What I would gve for advice on this is call your school administration, let them know you need to set up a 504 meeting. you will need to do this seperatly per child.

The 504 meeting should include parents - child if they want to be involved if its not stressful - 504 coordinater - principal, assistant principal, school nurse - all teachers that will have contact with child on a regular basis, this includes cafeteria workers for explanation of diet restrictions gym teacher, you name it. and this is when you explain everything that is going on with your child and what the needs are for this child , what they might expect etc. It helps the child for everyone to know, It helps the teachers to be more understanding as to why he may be unattentive one day and great the next.


For my son this 504 covers him for loss school time - excuses him from gym class and allows me to be his gym teacher and journal what we do (because of pain from Crohns and arthritis) My son has it set up that if his hemoglobin drops below a certain point then he will only be in school 1/2 days and will have a tutor 2x a week. once hemoglobin is back up he will go back full time. It also covers the fact that he misses 3 days of school every 6 to 8 weeks for treatments. His 504 also covers a counselor that he meets with at school to talk with. Very Important - It's been shown that children with crohns especially the ones whom suffer "Retardation of growth" tend to have alot of trouble with making and keeping friends due to being self concious or whatever else reasons. for my son he usually uses this as a griping session about mom or dad or school teachers or how he is grr at his sister, now and then he speaks of his disease but it's not a requirement, but there if needed. Also Very Important it allows him extra time to make up missed work so that he can keep up with class and try to keep good grades. Another item that the 504 helped with is while my son is anemic the school will allow him to eat extra snacks during the day they even helped with the extra snacks, and to also go to the nurses office to nap if he was tired ( his hemoglobin at this point was at 8)

For my daughter it covers her Gym class so that she walks only, no running she has hollow bones in her knee's , also has arthritis and IBS, asthma and more. Also in this it allows her to use her physical therapy time as gym class points. and some of the physical therapy is done right in school with a physical therapist. Also covers her so she can have extra time to make up work from missed time at school. She has frequent pnumonia so also misses alot of school.


Basically look at your childs strengths, weaknesses if it hurts your son to run have it so he can walk, if his hemoglobin is below a certain level have him excused from gym all together , your dr can tell you what number would be best, for my son anything below 9 and he is pulled from gym class all together. OH OH and and if he has to use bathroom frequently Have it in his 504 that he may get up go to the bathroom without asking each time. Gets very very embaressing for lil ones and they will try to hold everything in which is not good either. and soem teachers get upset if a child goes more then once per class etc. so I had to add a provision for bathroom privilages however if my son was caught abusing privilages then he would lose them. and if school has multi levels, even if he is on first floor make sure he gets a key to it for the year if it pains him to walk up stairs.

Here is a link to what I am referring to http://specialchildren.about.com/od/504s/f/504faq1.htm


Hope this helps, was hard cramming it all in to be as short as possible
pls excuse the typos
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Dance to the petals on the streams running down,
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Dance from the song you feel beat within your heart,
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Old 08-15-2010, 06:18 PM   #145
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So yeah , I have to laugh. In an earlier post I was mentioning murphy's law etc. and how we must laugh at it. Well Also in an earlier post someplace I had said I was the only healthy one in house. Well foolishness at me for saying that! Karma come for a visit so i was taken to the hospital by ambulance due to extreme pain... It was only Karma tossing some gallbladder problems my way, at least thats what we think it is at this point, Ultrasound will be tomorrow and if it is Gallbladder it will be removed within the next week or two Only time I have ever been really sick was at 4yrs old and that was tonsils... SooooOoooo I am hoping and praying that since we only have a lil over a month to go that a gallbladder surgery will go smooth and i'll be set for trip. Dr also says that eating the same diet as my son for the past 4 yrs (high fat diet low grains etc) is what brought me here well geeeesh i felt too guilty to eat all the fresh stuff in front of him ! So wee bit of advice for those who happen to come along with kiddos with crohns disease as sweet as it is do not follow thier diet with them But heyyy i get to lose weight hahaha Dr's put me on a Zero Fat diet.. LOL i kid you not i think my body was jealous everyone had a special diet in house but me.. So at this point i Give up making 1 meal for all 4 of us.. when all 4 of us have different diet restrictions less suppers for me to cook Luckily the counter service restaraunt that was picked out previosly will still work They also sell salads smart disney folks !

My sons wish coordinater is going to try and come by this week to see kiddos, goodness me you should have seen J's face when i told him
I still think it's so cute how he took to her so easily

Well it's great to still feel happy even with Karma coming for a visit !!
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Dance from the song you feel beat within your heart,
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Old 08-15-2010, 11:06 PM   #146
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So yeah , I have to laugh. In an earlier post I was mentioning murphy's law etc. and how we must laugh at it. Well Also in an earlier post someplace I had said I was the only healthy one in house. Well foolishness at me for saying that! Karma come for a visit so i was taken to the hospital by ambulance due to extreme pain... It was only Karma tossing some gallbladder problems my way, at least thats what we think it is at this point, Ultrasound will be tomorrow and if it is Gallbladder it will be removed within the next week or two Only time I have ever been really sick was at 4yrs old and that was tonsils... SooooOoooo I am hoping and praying that since we only have a lil over a month to go that a gallbladder surgery will go smooth and i'll be set for trip. Dr also says that eating the same diet as my son for the past 4 yrs (high fat diet low grains etc) is what brought me here well geeeesh i felt too guilty to eat all the fresh stuff in front of him ! So wee bit of advice for those who happen to come along with kiddos with crohns disease as sweet as it is do not follow thier diet with them But heyyy i get to lose weight hahaha Dr's put me on a Zero Fat diet.. LOL i kid you not i think my body was jealous everyone had a special diet in house but me.. So at this point i Give up making 1 meal for all 4 of us.. when all 4 of us have different diet restrictions less suppers for me to cook Luckily the counter service restaraunt that was picked out previosly will still work They also sell salads smart disney folks !

My sons wish coordinater is going to try and come by this week to see kiddos, goodness me you should have seen J's face when i told him
I still think it's so cute how he took to her so easily

Well it's great to still feel happy even with Karma coming for a visit !!

Oh my gosh!! Karma is a ____! You fill in the blank here please...
My sister in law just had her gall bladder out like 2 months ago. She lost weight like no man's business afterwards..... hmmmm..... maybe I need my gall bladder taken out too! I dunno if you ever looked at my TR, but I don't have the most flattering figure....

I hope it all goes well- and that bites that it happens now, right before the trip. But at least it wasn't during the trip!

Did they ever help you find a mattress for DD yet? I hope so! We had to get a new box spring the other month and that about killed us savings wise. And even worse- they cut DH's hours, so no overtime.... but anyway- enough about me!

Let us know how the meeting goes with your wish granter. Glad DS is excited!
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Old 08-16-2010, 02:34 AM   #147
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Just got caught up reading all the great info on your PTR. Looks like you all have a great plan for your time in the parks and the wish flight seems like it is a pretty exciting deal. AWESOME! I hope you are feeling better and I can't wait to continue following your planning for your trip.
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Old 08-16-2010, 06:51 AM   #148
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Oh my gosh about the gall bladder!!! But, I do have to say, I have been there, done that! I had mine out on the Wednesday before a Thanksgiving and was shopping with all the other crazy people on the Friday after Thanksgiving. So, if they can do it laproscopically(sp??), it is a fairly quick recovery. Watch eating salads until then..that triggered my episodes in addition to fat. BTW, I lost no weight!

Hopefully, everything will turn out great!!

Lynn
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Old 08-16-2010, 09:58 AM   #149
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Oh my gosh about the gall bladder!!! But, I do have to say, I have been there, done that! I had mine out on the Wednesday before a Thanksgiving and was shopping with all the other crazy people on the Friday after Thanksgiving. So, if they can do it laproscopically(sp??), it is a fairly quick recovery. Watch eating salads until then..that triggered my episodes in addition to fat. BTW, I lost no weight!

Hopefully, everything will turn out great!!

Lynn
You didn't loose any? Man.... that shoots my hopes of a quick weight loss program out of the sky! Oh well.... at least your surgery went well and it wasn't a bad recuperation period!

p.s. I'm almost done Christmas shopping already!!!! Yes, I'm a little nutters....
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Old 08-16-2010, 04:25 PM   #150
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I'm just joining in here, glad your son's latest treatment went well and excited that you got picked for the Big Give. I'm excited to hear more about your plans and then hear about your trip when you get back.
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