Prelude to a WDW Dream...Sept. 08 *NEW 9/9 Post 350*

[SkyGirl]

Everything sounds so great, Jay! I'm so excited for you and all those boys!!

 

[Illini4ever]

Hi Jay,

I am just getting caught up with everything. I enjoyed reading your mini report. Also everything sounds wonderful for the upcoming cruise.

I haven't been on in awhile as it has been pretty painful for me. We got some devastating news about our 7 year old daughter. Last month she was diagnosed with neurofibromatosis. It completely blindsided us as she has always been healthy and met all her milestones. After doing tons of research and meeting with many doctors, we are optimistic that she will continue to be okay however we are scared for the future. It just reminds us how precious our children are and to always hold them close. I know you guys don't know me or my family, but any prayers you could direct our way would be greatly appreciated.

Thanks for listening, and I will continue to be a faithful reader. I always have a big smile on my face after reading your reports.

 

[John's Mom]

Illini4ever,

My prayers and thoughts are with you and your family.

 

[SoonerGirl]

I haven't been on in awhile as it has been pretty painful for me. We got some devastating news about our 7 year old daughter. Last month she was diagnosed with neurofibromatosis. It completely blindsided us as she has always been healthy and met all her milestones. After doing tons of research and meeting with many doctors, we are optimistic that she will continue to be okay however we are scared for the future. It just reminds us how precious our children are and to always hold them close. I know you guys don't know me or my family, but any prayers you could direct our way would be greatly appreciated.

I wasn't sure what neurofibromatosis was, so I googled it. What a scary thing for your family to have to go through! I'll keep you and your DD in my prayers.

 

[SkyGirl]

Illini4ever,

I'm so sorry!

Your daughter is in my prayers.

 

[jaycns]

Hi Jay,

I am just getting caught up with everything. I enjoyed reading your mini report. Also everything sounds wonderful for the upcoming cruise.

I haven't been on in awhile as it has been pretty painful for me. We got some devastating news about our 7 year old daughter. Last month she was diagnosed with neurofibromatosis. It completely blindsided us as she has always been healthy and met all her milestones. After doing tons of research and meeting with many doctors, we are optimistic that she will continue to be okay however we are scared for the future. It just reminds us how precious our children are and to always hold them close. I know you guys don't know me or my family, but any prayers you could direct our way would be greatly appreciated.

Thanks for listening, and I will continue to be a faithful reader. I always have a big smile on my face after reading your reports.

How heart wrenching. To hear that your child has any disease is beyond scary. To hear they have one that so "unknown" is even scarier. To find out that it has no cure as of yet is just terrifying. BUT...I will be praying she STAYS healthy and on track with all of her development and that in her life this is just one of those things that she has to be aware of but yet never presents itself as anything more than a worry and annoyance.

I just watched a special on this disease just last week. I think it was on Discovery Health or maybe just the Discovery channel. It was about a little boy in England. I'm sorry I cannot remember the name of the show or anything more to help you find it. Maybe you already caught it.


I will be praying. I am sure that everyone will join me in sending showers of pixie dust , good thoughts and prayers. If I can possibly do anything else, PLEASE let me know. While I am at WDW I would be happy to send each of your children a postcard from their favorite characters. I know it's hard on the siblings of someone dealing with a health issue too. I would even be happy to send on a little WDW care package so that they all get a bit of the magic sent to them. You can PM me if you are interested.

And I promise, I will be praying. Please let me know if you need anything specific prayed for. You are more than welcome to post it here or you can PM if you want.

I am sending you great big hugs!

 

[Figment's Friend]

Hi Jay,

I am just getting caught up with everything. I enjoyed reading your mini report. Also everything sounds wonderful for the upcoming cruise.

I haven't been on in awhile as it has been pretty painful for me. We got some devastating news about our 7 year old daughter. Last month she was diagnosed with neurofibromatosis. It completely blindsided us as she has always been healthy and met all her milestones. After doing tons of research and meeting with many doctors, we are optimistic that she will continue to be okay however we are scared for the future. It just reminds us how precious our children are and to always hold them close. I know you guys don't know me or my family, but any prayers you could direct our way would be greatly appreciated.

Thanks for listening, and I will continue to be a faithful reader. I always have a big smile on my face after reading your reports.

I'm sorry as well You can bet your daughter and family will be in my thought's as well, it must be so hard

 

[CJsMom]

I have been so behind - but your plans are still wonderful! Illini4ever - thinking of you and your family - hang in there.

 

[disneysuncat]

Jaycn, I finally re-located your thread! *waves wildly*

Long lost pal 'o mine!

 

[jaycns]

I hope you are all out having a wonderful 4th of July! I am on my way to a tasty meal with friends and then fireworks. I am looking forward to good times!!

 

[jaycns]

Jaycn, I finally re-located your thread! *waves wildly*

Long lost pal 'o mine!

Suncat...it's great to see you! I must do a better job of not losing touch this time! I am glad you found the report and even more happy that you figured out it was me! Hope you have a great 4th of July!

 

[Illini4ever]

I can't thank everyone enough for all the kind words and support. It means the world to me. You all are awesome!

Jay, I just want to say that you're an incredible person. Here you don't even know us and yet you are so generous to offer to help. Words cannot express how much that means to me. I think I may have to take you up on that postcard idea. You are the best!

On a side note, I didn't see the special about the boy. I actually didn't even know one thing about this disease a few weeks ago, and now I feel like I'm an expert. I do feel a bit better after talking with a geneticist as she said many people live totally normal lives and some people have it and they don't even know. The internet seems to show the most severe cases and I was just a total wreck. Although I tried to hide it from my daughter so she wouldn't be scared. Her MRI came back normal so its just something she will have to be checked once a year but otherwise we are just going to keep living our lives and pray for the best. I just pray for a cure and that my daughter continues to live a happy life without medical problems.

Once again, thank you to everyone for all the loving support. Jay, I can't wait to read more details about the trip. It all just sounds amazing!

 

[Illini4ever]

I can't thank everyone enough for all the kind words and support. It means the world to me. You all are awesome!

Jay, I just want to say that you're an incredible person. Here you don't even know us and yet you are so generous to offer to help. Words cannot express how much that means to me. I think I may have to take you up on that postcard idea. You are the best!

On a side note, I didn't see the special about the boy. I actually didn't even know one thing about this disease a few weeks ago, and now I feel like I'm an expert. I do feel a bit better after talking with a geneticist as she said many people live totally normal lives and some people have it and they don't even know. The internet seems to show the most severe cases and I was just a total wreck. Although I tried to hide it from my daughter so she wouldn't be scared. Her MRI came back normal so its just something she will have to be checked once a year but otherwise we are just going to keep living our lives and pray for the best. I just pray for a cure and that my daughter continues to live a happy life without medical problems.

Once again, thank you to everyone for all the loving support. Jay, I can't wait to read more details about the trip. It all just sounds amazing!

 

[Illini4ever]

Sorry for the double post. I'm not the most internet savvy person in the world, not sure exactly what happened!

 

[disneydusted]

Hi Jay, just did a quick check to see if there is any news from your side of Disney and I am seeing Illini4ever's posts. It is a heart felt hurt when one of your children is not well, Illini4ever I will surely be keeping your daughter in our prayers. Jay, that was a really nice thing to offer up some Disney magic while you are there. Everyone is so nice on the DISboards!

 

[SoonerGirl]

I actually didn't even know one thing about this disease a few weeks ago, and now I feel like I'm an expert. I do feel a bit better after talking with a geneticist as she said many people live totally normal lives and some people have it and they don't even know. The internet seems to show the most severe cases and I was just a total wreck. Although I tried to hide it from my daughter so she wouldn't be scared.

I know exactly what you mean about seeing the most severe cases on the internet. When my oldest son was 7 he was diagnosed with Perthes Disease (it's a condition more than a disease, not sure why they call it that ). I came home from that first doctors appt and read everything I could read on the internet and I was a wreck when I was done. He didn't have near the problems that most of the cases I read had had, he still has to be checked annually, but other than that he is a normal 12 year old boy. I hope your DD can lead a normal life and that this doesn't effect her too severely.

 

[MouseTriper]

Hi Jay,

I am just getting caught up with everything. I enjoyed reading your mini report. Also everything sounds wonderful for the upcoming cruise.

I haven't been on in awhile as it has been pretty painful for me. We got some devastating news about our 7 year old daughter. Last month she was diagnosed with neurofibromatosis. It completely blindsided us as she has always been healthy and met all her milestones. After doing tons of research and meeting with many doctors, we are optimistic that she will continue to be okay however we are scared for the future. It just reminds us how precious our children are and to always hold them close. I know you guys don't know me or my family, but any prayers you could direct our way would be greatly appreciated.

Thanks for listening, and I will continue to be a faithful reader. I always have a big smile on my face after reading your reports.

Your daughter and the rest of your family will be in our prayers.

 

[MouseTriper]

Jay...your ship plans and excursions sound wonderful...especially your day at the spa....Aaaaaaaaaaaaaaaaaaa!!!

 

[jaycns]

Tomorrow I will get back on track with vacation planning! I am going to be calling the concierge planners tomorrow and going over "in room treats" for the boys with them. I will make sure to post what comes of that discussion and also to post the tentative menu for the dessert party on the Grand 1.

I just got the plans late Friday. I will be sure to share those with you all tomorrow!

I hope you are all having a great weekend!

 

[jaycns]

I can't thank everyone enough for all the kind words and support. It means the world to me. You all are awesome!

Jay, I just want to say that you're an incredible person. Here you don't even know us and yet you are so generous to offer to help. Words cannot express how much that means to me. I think I may have to take you up on that postcard idea. You are the best!

On a side note, I didn't see the special about the boy. I actually didn't even know one thing about this disease a few weeks ago, and now I feel like I'm an expert. I do feel a bit better after talking with a geneticist as she said many people live totally normal lives and some people have it and they don't even know. The internet seems to show the most severe cases and I was just a total wreck. Although I tried to hide it from my daughter so she wouldn't be scared. Her MRI came back normal so its just something she will have to be checked once a year but otherwise we are just going to keep living our lives and pray for the best. I just pray for a cure and that my daughter continues to live a happy life without medical problems.

Once again, thank you to everyone for all the loving support. Jay, I can't wait to read more details about the trip. It all just sounds amazing!

I will join you in hoping for a cure and praying for your daughter's continued healthy, happy life! Just PM me the information and I will make sure that Diseny makes it to your mailbox come September/October.

And now...on with the planning updates!