all about Samantha and her pretrip to GKTW

[alisam]

Hi Jackie . That is so funny about Ariel. My oldest daughter loves Ariel and has all of the Disney globes with her on it. I can't wait to see the new section. I am sure they will like it. On Saturday we are at 60 days from our trip. Now it is going to drag. Samantha sent a poem to make a wish and they loved it so I hope they are going to use it . They called and asked me about it. She was excited about that.tomorrow I have her IEP meeting. Do you have IEP meetings for Trevor ? We have a couple oF Dr appointments this week and more blood work for the hematologist. We did three sets so far they need one more hope that is the end for them. and we get good news.

Stay well Janet

 

[Lilfoot93]

Before you know it April will be here and time to go on your trip! That is great that Samantha sent a poem to MAW and that would be awesome if they use it! Praying for good news from her tests! No. Trev does not have IEP services. He had used some services when he was younger but no longer needs them.

Jackie

 

[alisam]

Hi Jackie
Just got some of the news back. Her platelets came back good. Now just one more study and we are done with that chapter. I'm glad he doesn't need the services anymore. We are getting ready for Sam's college aide She needs someone with her She has an Individual para that stays with her all day. That is what we were working in today at her IEP. How is having twins. you must be very busy. do you work outside of the house. I am hoping to be done in 2 years and onto a retirement village. Just spending time with Sam will be nice, and being able to travel to see my other daughter will be nice also. I wish it was sooner. That's why this vacation is going to be so great. We will all be together
even if for only a few days. Maw is such a great thing I am so sorry we didn' t do this earlier as I am still having fun everyday reading other peoples wishes and how they have gone. are you still looking online as well?

Stay well Janet

 

[alisam]

Hi All
Samantha's poem got put on the make a wish Facebook site Saturday
She has had many people look at it and comment. She is so excited . It was so nice of make a wish to do.

Stay well
Janet

 

[happybelle]

Hi All
Samantha's poem got put on the make a wish Facebook site Saturday
She has had many people look at it and comment. She is so excited . It was so nice of make a wish to do.

Stay well
Janet

I just looked on your report for the poem and didn't see it. Did I miss it? Why don't you post it for us to read as well.

 

[alisam]

Hi Happybelle
I will see if my daughter can copy and paste it here . But just in case if you go to face book and then in the search bar put in make a wish nj it is on their home page about the second or third item down.
Are you a wish family also?

Have a great day
stay well Janet

 

[Lilfoot93]

Hi Jackie
Just got some of the news back. Her platelets came back good. Now just one more study and we are done with that chapter. I'm glad he doesn't need the services anymore. We are getting ready for Sam's college aide She needs someone with her She has an Individual para that stays with her all day. That is what we were working in today at her IEP. How is having twins. you must be very busy. do you work outside of the house. I am hoping to be done in 2 years and onto a retirement village. Just spending time with Sam will be nice, and being able to travel to see my other daughter will be nice also. I wish it was sooner. That's why this vacation is going to be so great. We will all be together
even if for only a few days. Maw is such a great thing I am so sorry we didn' t do this earlier as I am still having fun everyday reading other peoples wishes and how they have gone. are you still looking online as well?

Stay well Janet

That is wonderful news!! I am not online as much looking at everyones as I have subscribed to so many that I don't have time to check them everyday! But I try to at least once a week catch up.

Hi All
Samantha's poem got put on the make a wish Facebook site Saturday
She has had many people look at it and comment. She is so excited . It was so nice of make a wish to do.

Stay well
Janet

That is great! I will go check it out!

Jackie

 

[alisam]

Hi Jackie
no worries I was crazy this week too. Did u see her poem. It was awesome that they posted it. Her friend that is coming with us came over today and they went over their trip and the rides they want to go on etc. it is exciting. Also we got the approval for her to skip a grade and she will graduate high school next year, She is starting her first college class after we get back from our trip. She is taking a quick term so it doesn't interfere with her medical life.

Hope you guys are all doing well and that you are all still enjoying the excitement of your upcoming trip

stay well
Janet

 

[angel's momma]

Hi Janet Sorry that I wasn't aware of your thread earlier. Do you know about the Wish Tripper's thread? http://www.disboards.com/showthread.php?t=2807833 You can connect with other families planning Wish trips. There's also info on how to make a link to your thread & post it in your signature.

So sorry that your DD has been through so much. Yay that she's getting her wish My DD is 15, and wished for a Disney Cruise.

How exciting about the cheerleading nationals And that sh'e skipping a grade.

We checked FB for the poem - it's wonderful We left a <3 there from DD's support page, Angel's a.n.t.s

 

[Lilfoot93]

Hi Jackie
no worries I was crazy this week too. Did u see her poem. It was awesome that they posted it. Her friend that is coming with us came over today and they went over their trip and the rides they want to go on etc. it is exciting. Also we got the approval for her to skip a grade and she will graduate high school next year, She is starting her first college class after we get back from our trip. She is taking a quick term so it doesn't interfere with her medical life.

Hope you guys are all doing well and that you are all still enjoying the excitement of your upcoming trip

stay well
Janet

I did see the poem it was wonderful!! That is great she gets to skip a year and graduate early! We are doing better now that we know Trev's tests came back good. He goes back in a few months for a routine checkup this time Hope everything is going well for you guys.

Jackie

 

[alisam]

Hi Christi
I saw about the disboard I will click on the link later to see the pages. You will be leaving the day we are arriving. I just talked to our wish volunteer and it seems as if her reveal will be on April 13th. Did you have your reveal yet. We are going to the castle in Monroe NJ. Samantha is very excited as she heard that wish kids get a star and a key to the palace. We will have to see. I am glad to see we are not the only ones with the count down going. Will this be your first time on a Disney cruise. I heard they were great. We have been on Carnival a couple of times but never disney. I hope you all have a great trip. I look forward to hearing from you.

Stay well Janet

 

[angel's momma]

Thank you Janet Samantha's reveal sounds wonderful. I don't think our chapter does a reveal. It is our first cruise.

 

[alisam]

Hi Jackie
I hope his appointment goes well. We are at CHOP so often it is our second home. Today we spoke to our wish volunteer. Our tentative reveal party is on April 13th Samantha is so excited . I hope it is what she is looking for . She wanted a key to the castle and her own star but I don't know if that happens
Here's to hoping. Have you volunteers been in touch with you yet?

stay well
Janet

 

[alisam]

Hi Christi
I just noticed you live in Illinois. My older daughter is in medical school in Illinois. are you close to the city or in the suburbs. My daughter is in Waukegan.
She loves it. It is a little bit of a commute for her everyday but worth the difference in the size of her apartment. I like where she lives now. Are you flying or driving to Florida to get the cruise?

Stay well
Janet

 

[angel's momma]

We're neither We live in a teeny tiny rural "village" of about 500. We're about 3 hours south of Waukegan, but we used to go up there to go to Great America (wow that was a long time ago ) We're flying.

 

[Lilfoot93]

Hi Jackie
I hope his appointment goes well. We are at CHOP so often it is our second home. Today we spoke to our wish volunteer. Our tentative reveal party is on April 13th Samantha is so excited . I hope it is what she is looking for . She wanted a key to the castle and her own star but I don't know if that happens
Here's to hoping. Have you volunteers been in touch with you yet?

stay well
Janet

Your reveal is coming up!! Ours will be the middle of May. We will be having a party at our house and hopefully the Star Wars guys from the 501st Legion will be there. Trev and the girls would be SO excited!! I'm sure her reveal party will be magical! We have been in touch with our volunteers. Trev made his wish last spring but because he wished for Star Wars Weekend we had to wait until the following year because there were only 2 weekends left when he made his wish!

Jackie

 

[alisam]

Hi Jackie
That will be cool if the star wars character would come . I am sure he is going to be thrilled. The travel coordinator called us today the reveal needed to be moved to the 20th either way its great. Samantha has 20 people she wants to invite so I am going to bring a cake and snacks and stuff. The castle will be great for her she has been looking forward to going. Either way the days are going fast. My sister and I were looking for party ideas for disney their are so many it is going to be fun to plan. Our chapter does something special that is a surprise for the child the day of the reveal. But we won't know what it is. I hope all is well with you family. talk with you soon

Stay well
Janet

 

[alisam]

Hi Christi
My daughter has been sending me pictures of all of the snow . She is not used to it. She lives close to the amusement park as she went alot last year.
We live close to six flags great adventure so we had season passes. It was good that she was able to use the pass there too. Does your chapter do a going away party instead. each chapter is so different. They do something special for the kids at the reveal. I just don't know what it is. We are bringing cake and stuff to the castle it will be fun. It is good that you are flying the trip will go fast that way. My older daughter is flying in from O'Hare airport for the two days. She prefers flying from Milwaukee Airport. Have a great day

Stay well Janet

 

[angel's momma]

Your daughter's area has gotten a lot more snow this year than we have. How exciting that there will be a surprise at the reveal. I don't think our chapter does a party either. We're used to a 2 1/2 hour direct flight,, but this time we have to fly an hour north to O'Hare, have a 2 hour layer, and then a 3 hour flight.

 

[alisam]

Hi Christi
My Daughter did that layover thing from Milwaukee to O'hare for a couple of hours. She said that made no sense. How is your daughter doing now. Are her counts up? My daughter is seeing a hematologist. She has patechia and they can't figure out why. Her platelets are fine but the function of the platelets is what they are testing. It sounds like your family has been through a lot. It is amazing how strong everyone gets. Is their a Children's hospital that you are close to and comfortable with. My Daughter loves CHOP but they are now sending us to U Penn they have Specialty testing there that she needs Grown up tests. That CHOP doesn't have. It is hard transitioning to an adult hospital.
Is you daughter on the Disney cruise Website a lot . My daughter used to love going on cruises. right now she is unable to cruise. You are going to have such a great time

Stay well
Janet