Jordyn's Journey to Disney-(MAW) Make a Wish Trip - Starting October 4th, 2013!!!

[mommy2mrb]

so happy the album made it! we all enjoyed putting it together!



sorry it was such a long day at the clinic, prayers that the new treatment will be easier on Jordyn!

movie night looks fun!

have a great week!

 

[Jessicalynne]

We had Mickey mail come today, and the kids were so excited! Thank you to Diane! The outfits are amazing and the kids love them! Jordyn really likes the spiders hanging on the skirt. Jeremy couldn't try it on fast enough, he was so excited! He totally hammed it up for the camera because he liked the outfit so much. Jordyn told me she can't wait to wear it on our trip and for Halloween. Thank you so much! They are beautiful!

 

[dianemom2]

We had Mickey mail come today, and the kids were so excited! Thank you to Diane! The outfits are amazing and the kids love them! Jordyn really likes the spiders hanging on the skirt. Jeremy couldn't try it on fast enough, he was so excited! He totally hammed it up for the camera because he liked the outfit so much. Jordyn told me she can't wait to wear it on our trip and for Halloween. Thank you so much! They are beautiful!

I'm glad that you got the outfits and that they fit the kids. I LOVE the pictures! Thank you so much for sharing them. Have a wonderful trip to Disney!

 

[dianemom2]

By the way, the white Mickey heads on the top should glow in the dark. I made them with glow in the dark fabric. I've never used it before so I'm not sure how much "glow" it has.

 

[Jessicalynne]

By the way, the white Mickey heads on the top should glow in the dark. I made them with glow in the dark fabric. I've never used it before so I'm not sure how much "glow" it has.

Thank you so much! We love the outfits, they are adorable! I will have to check it out tonight and see how well it works! I am excited to try it out! Thank you for letting me know about that fun addition to the outfits!

 

[Redwavess]

Hey you,

So sorry to hear about your long clinic day and your cold. That stinks!! Sounds like they had you running up and down the hospital that. I hope that her numbers look better and new treatment will make the differences the doctors hope to see it make!!

The BIG GIVE has been awesome!!!

I love the photo album and the Halloween outfits are adorable!! Glow in the dark too is so awesome!!! I can't believe the detailing... I love the bottom of the skirt and pumpkin Mikey... and the spider Mickey!! They are just perfect!!

I hope you are feeling great now and have a super weekend!!

I'll be back soon,

Madeline

 

[Jessicalynne]

Hey you,

So sorry to hear about your long clinic day and your cold. That stinks!! Sounds like they had you running up and down the hospital that. I hope that her numbers look better and new treatment will make the differences the doctors hope to see it make!!

The BIG GIVE has been awesome!!!

I love the photo album and the Halloween outfits are adorable!! Glow in the dark too is so awesome!!! I can't believe the detailing... I love the bottom of the skirt and pumpkin Mikey... and the spider Mickey!! They are just perfect!!

I hope you are feeling great now and have a super weekend!!

I'll be back soon,

Madeline

I really don't like long clinic days, but it makes me really appreciate that we aren't doing it all the time like we used to... It is nice to just have an occasional long day at the hospital as opposed to hospital stays, long clinic days every week, and blood transfusions all the time. I think this last long clinic made me frustrated at first , but then I felt grateful when I really thought about our journey and how far we have come. I wish her new treatment antibiotic wasn't so scary though... Come to find out it can cause all types of problems with the heart and other things... I feel like at this point, I just need to trust the doctors though because they are feeling really uncomfortable with the lower dose of chemo she is getting and when her oncologist worries, that is kind of scary!

We have been loving the Big Give! It is truly an amazing thing! The people are all so amazing and talented with big hearts! I know it has really made a positive impact on my kids lives and my husband and I as well. Just knowing people are there for you through hard times makes life seem more doable, you know?

I hope you and your family are doing well! It is so great to hear from you on here. I hope Mallory is feeling well too. You guys are an amazing family, and super strong and really awesome!

 

[Jessicalynne]

We got another couple Big Gives the other day that were completely amazing as always! I have been meaning to post, but with my husband home, we have been spending time together as a family. Plus I am a member of an exercise challenge group this month to help me to prepare for Disney World, and it has been a challenge getting everything done that I normally do, plus exercise and eat healthier. Anyway...

The first one was from F. Stevenson, not sure of the dis name. Thank you so much! The kids adore these! They are incredible! We love them!


I love the first picture of Jeremy! He has the funniest face! I love how excited he is!

This is a typical Jeremy. He love to play with hair, especially when he is tired.

Jordyn could barely take her eyes of the pillowcase to let me get any pictures, she loves it so much!

Same with Jeremy, he could barely take his eyes off to let me get a picture. He loves to look at it!

 

[Jessicalynne]

The next package was from FairyGOODmother, and was for the whole family! The kids were so excited to all match! Yay! We love them! They are all super cute! Thank you so much for taking the time to make our family something so amazing! We really appreciate it!

Jeremy knew he should be excited even before we opened it.

The kids were both very excited. Jordyn even asked me to do her hair up so that she would look extra cute for the pictures. (We took pictures on another day with all of us, that is why in some of these, her hair is crazy!)

We even took pictures of us (Jacob and I). The dog decided she wanted to be a part of it too. Jordyn took the far away picture of us. She is pretty good with a camera!

Thank you so much! We are excited to wear them on our trip!

 

[Jessicalynne]

Jeremy received a package just for him today! He was sooo very excited! (He doesn't get his own special things in the mail very often, so he gets pretty excited when he does)

Thank you to FairGOODmother again for this special package! Jeremy absolutely loves the outfit and it was hard to talk him into taking it off to take his nap today.

I love the look on Jeremy's face as they try to open his package. He was concentrating so hard!

He immediately tried to put them on over his clothes he was already wearing, but that didn't work to well. He was pretty excited!

And of course I had to share this upside down picture of him because it shows how active and silly he is all the time.

Thank you so much for the outfit! It is super cute, and we all love it!

 

[PurpleEars]

We got another couple Big Gives the other day that were completely amazing as always! I have been meaning to post, but with my husband home, we have been spending time together as a family. Plus I am a member of an exercise challenge group this month to help me to prepare for Disney World, and it has been a challenge getting everything done that I normally do, plus exercise and eat healthier. Anyway...

The first one was from F. Stevenson, not sure of the dis name. Thank you so much! The kids adore these! They are incredible! We love them!


I love the first picture of Jeremy! He has the funniest face! I love how excited he is!

This is a typical Jeremy. He love to play with hair, especially when he is tired.

Jordyn could barely take her eyes of the pillowcase to let me get any pictures, she loves it so much!

Same with Jeremy, he could barely take his eyes off to let me get a picture. He loves to look at it!

*Joining with a sheepish look*

I am glad that the package arrived. I realized I forgot to put a note in the package 2 days after I mailed it! I am happy to see that Jordyn and Jeremy like the pillowcases. I hope the pillowcases will be a good reminder of the trip for them! Enjoy your trip!

 

[Redwavess]

I really don't like long clinic days, but it makes me really appreciate that we aren't doing it all the time like we used to... It is nice to just have an occasional long day at the hospital as opposed to hospital stays, long clinic days every week, and blood transfusions all the time. I think this last long clinic made me frustrated at first , but then I felt grateful when I really thought about our journey and how far we have come. I wish her new treatment antibiotic wasn't so scary though... Come to find out it can cause all types of problems with the heart and other things... I feel like at this point, I just need to trust the doctors though because they are feeling really uncomfortable with the lower dose of chemo she is getting and when her oncologist worries, that is kind of scary!

We have been loving the Big Give! It is truly an amazing thing! The people are all so amazing and talented with big hearts! I know it has really made a positive impact on my kids lives and my husband and I as well. Just knowing people are there for you through hard times makes life seem more doable, you know?

I hope you and your family are doing well! It is so great to hear from you on here. I hope Mallory is feeling well too. You guys are an amazing family, and super strong and really awesome!

Wow that is amazing that you have that kinda of perspective on the clinic day and so soon after it happened. Thanks for sharing that!!! It is a good reminder. After our hospital stays me and my husband would joke that a bad at work is still better than the best day at the hospital!!

I know what you mean by how special the BIG GIVE is!!! We ALL got so into it!! Even our teenager and my husband were super touched and moved by the kindness of people we had never met!!

Mallory is doing well!! Thanks for asking. We have made a HUGE change though... We are homeschooling!! I have wanted to be a school teacher as long as I can remember and so I never considered home-school. I just always assumed the kids would go to the school I taught at.

Homeschooling came about for a number of reasons:

First, we did have an issue some days back. She was participating in her 1st day of PE in 3rd grade and she collapsed while trying to run faster than she ever had before in her own words. She was running so fast because she could feel the kids behind her catching up to her and she was afraid they would knock her over as often happens because she is SO much smaller than them. Second, as a consequence of her heart defect she has had some brain issues and has difficulty focusing in a class of 33 students. Although she does really well in school the issue focusing means it takes her a lot longer than the typical child to finish her work. Finally, because of her size (she is 8 years old but is the size of a 4 year old) she gets hurt a lot or is teased on the playground, so she has been coming into my classroom with a few friends for recess and lunch.

I found a charter school that sponsors homeschooling and we are going through them. What is so nice is that now Mallory can attend enrichment classes when we want like they have an Ocean Explores class on Wednesdays. Plus she can go to lunch and activity time 2 days a week with other kids at this new charter school. And they pay for lots of other enrichment opportunities like dance, gymnastics, piano, art, field trips... whatever she would like to do in the community. She can go to class to get help in the core subjects if needed, but most of the actual schooling happens at home and at her pace. Friday was our 4th day of schooling this way and it is going really well.

I made her 3 school rules:

Love yourself
Love your school
Keep Trying

It was fun today because I purchased tons of art projects she can do, as she chooses. Since my husband works from home we haven't had to make any changes to our lifestyle. Except I take her to the park everyday for recess!! I teacher the lessons when I get home from school and she completes the work I leave her the next day on her own (we want to make sure she stays independent) while my husband is doing his work from home. We are going on our 1st field trip coming out and it will be to a Kids museum in Pasadena. Since I work during the week when most of group homeschooling field trips occur we are going to do most of our field trips as a family on Saturday with one of her friends joining us. This fits her so much better than what public school did. So surprisingly I find myself homeschooling!! So that is what has been going on with us!! Sorry that got so long.

I know new meds and doctors feeling concerned can be scary!!! Lots of prayers that this is new course will work wonderfully!!

Okay I'm off to read your next post!!

Madeline

 

[Redwavess]

Love love love the new Big Gives!!!

The pillowcases are awesome! I love how they match and I love the Princess Jordyn inscription!!!

And wow are the Make a Wish shirts awesome!!! It looks like each name has different material? . Is that right?! If so what is the material for each name? Are they your favorite characters?! Anyway they are so cool!! We loved walking around matching... It was so fun!!!

Looking forward to seeing more!!!!

Madeline

 

[Jessicalynne]

*Joining with a sheepish look*

I am glad that the package arrived. I realized I forgot to put a note in the package 2 days after I mailed it! I am happy to see that Jordyn and Jeremy like the pillowcases. I hope the pillowcases will be a good reminder of the trip for them! Enjoy your trip!

Thank you so much! Thank you for popping and letting us know who sent my kiddos some magic! They really do love them!l

Wow that is amazing that you have that kinda of perspective on the clinic day and so soon after it happened. Thanks for sharing that!!! It is a good reminder. After our hospital stays me and my husband would joke that a bad at work is still better than the best day at the hospital!!

I know what you mean by how special the BIG GIVE is!!! We ALL got so into it!! Even our teenager and my husband were super touched and moved by the kindness of people we had never met!!

Mallory is doing well!! Thanks for asking. We have made a HUGE change though... We are homeschooling!! I have wanted to be a school teacher as long as I can remember and so I never considered home-school. I just always assumed the kids would go to the school I taught at.

Homeschooling came about for a number of reasons:

First, we did have an issue some days back. She was participating in her 1st day of PE in 3rd grade and she collapsed while trying to run faster than she ever had before in her own words. She was running so fast because she could feel the kids behind her catching up to her and she was afraid they would knock her over as often happens because she is SO much smaller than them. Second, as a consequence of her heart defect she has had some brain issues and has difficulty focusing in a class of 33 students. Although she does really well in school the issue focusing means it takes her a lot longer than the typical child to finish her work. Finally, because of her size (she is 8 years old but is the size of a 4 year old) she gets hurt a lot or is teased on the playground, so she has been coming into my classroom with a few friends for recess and lunch.

I found a charter school that sponsors homeschooling and we are going through them. What is so nice is that now Mallory can attend enrichment classes when we want like they have an Ocean Explores class on Wednesdays. Plus she can go to lunch and activity time 2 days a week with other kids at this new charter school. And they pay for lots of other enrichment opportunities like dance, gymnastics, piano, art, field trips... whatever she would like to do in the community. She can go to class to get help in the core subjects if needed, but most of the actual schooling happens at home and at her pace. Friday was our 4th day of schooling this way and it is going really well.

I made her 3 school rules:

Love yourself
Love your school
Keep Trying

It was fun today because I purchased tons of art projects she can do, as she chooses. Since my husband works from home we haven't had to make any changes to our lifestyle. Except I take her to the park everyday for recess!! I teacher the lessons when I get home from school and she completes the work I leave her the next day on her own (we want to make sure she stays independent) while my husband is doing his work from home. We are going on our 1st field trip coming out and it will be to a Kids museum in Pasadena. Since I work during the week when most of group homeschooling field trips occur we are going to do most of our field trips as a family on Saturday with one of her friends joining us. This fits her so much better than what public school did. So surprisingly I find myself homeschooling!! So that is what has been going on with us!! Sorry that got so long.

I know new meds and doctors feeling concerned can be scary!!! Lots of prayers that this is new course will work wonderfully!!

Okay I'm off to read your next post!!

Madeline

Homeschooling sounds like it might turn out well! It is always good to spend extra special time with our kids, and it sounds like this year was a good time to make that decision. That sounds really scary what happened in her PE class... We end up doing things for our kids we never thought we would end up doing because everyone has different needs and because we love them of course! It sounds like home school will be a good experience for you all. I hope it works out well for you!

Yeah, new meds, bleh... I guess just about anything about cancer meds are scary for one reason or another, so maybe it shouldn't surprise me that her antibiotic now has to have scary possible side effects now too...

Love love love the new Big Gives!!!

The pillowcases are awesome! I love how they match and I love the Princess Jordyn inscription!!!

And wow are the Make a Wish shirts awesome!!! It looks like each name has different material? . Is that right?! If so what is the material for each name? Are they your favorite characters?! Anyway they are so cool!! We loved walking around matching... It was so fun!!!

Looking forward to seeing more!!!!

Madeline

Yeah, it is like the print and iron on things. Jordyn's has Ariel, Jacob's and Jeremy's have Mickey, and mine has a bunch of fun character's. I think they call it a name fill? We love them and are excited~!

Thank you for following along!

 

[Jessicalynne]

Two packages from the big give came yesterday! They were amazing! And, they just so happened to go together! The first package came from Darla. Thank you so much for the shirts! They are super cute and I can't wait for Jordyn to wear them on our trip! Thank you for the time and effort you put in to help our little family have a wonderful experience with our upcoming wish trip!

The second package came from Sheila. Thank you so much for the beautiful twirly skirts! They match perfectly with the shirts! And also much thanks for the crayon rolls, coloring books, and adorable matching headbands!!! Jordyn absolutely adores the skirts and they twirl perfectly! We really appreciate your thoughtfulness and time and effort you spent to help make this upcoming wish trip as amazing as it could possibly be!

Random pic of Jeremy... Just cuz I think he is so cute with his smile here!

He LOVES his crayon roll and coloring book!

Jordyn had to test out spinning in her new skirts. I think they passed the spin test!

 

[fairygoodmother]

Jessica, I'm so glad that those arrived on the same day! Sheila and I have never met and live far from one another, but we were able to coordinate well for Jordyn. The skirts are absolutely beautiful, and I'm so glad the shirts match as well as they do!

My prayer is that this entire trip is a blessing to your family. Jordyn is a beautiful little girl, your family is beautiful, and I wish you the best that life and Disney have to offer you.

Darla

 

[GrammytoMany]

Hi Jessica,
Oh, I'm so glad my package and Darla's arrived the same day. I can't believe how great Darla's shirts go with the my skirts.

I hope you and your beautiful family have a very magical time at Disney. I'm so glad that I could be part of the Big Give, too.
Sheila

 

[Redwavess]

Yeah, it is like the print and iron on things. Jordyn's has Ariel, Jacob's and Jeremy's have Mickey, and mine has a bunch of fun character's. I think they call it a name fill? We love them and are excited~!

Thank you for following along!

Oh that is SO cool!!

I don't have a crafting bone in my body so all this is new for me!! I just loved the way they came out!! So CUTE!!! banana:

I can't believe you got the matching shirts and skirts on the same day!! That was PERFECT!! I love the faith trust and a a little bit of Pixie Dust!!! It is such a cute saying and perfect for a wish trip!! What an awesome job on these outfits!!! Love them!!

Madeline

 

[Restrasz]

I just found your pre trip report through the link on Facebook. I am so excited for your beautiful family to go on your trip! I know you will have a great time (and be be the best dressed family at the world). Ruth

 

[Jessicalynne]

Hi Jessica,
Oh, I'm so glad my package and Darla's arrived the same day. I can't believe how great Darla's shirts go with the my skirts.

I hope you and your beautiful family have a very magical time at Disney. I'm so glad that I could be part of the Big Give, too.
Sheila

I know, that was perfect timing! And they really do go wonderfully together! Thank you so much!

I know that we will have a magical time at Disney. I can already tell because we are already feeling the magic and we haven't even left yet!

Oh that is SO cool!!

I don't have a crafting bone in my body so all this is new for me!! I just loved the way they came out!! So CUTE!!! banana:

I can't believe you got the matching shirts and skirts on the same day!! That was PERFECT!! I love the faith trust and a a little bit of Pixie Dust!!! It is such a cute saying and perfect for a wish trip!! What an awesome job on these outfits!!! Love them!!

Madeline

I am really loving all of the Big Give love! It helps make us feel really special and is the perfect start to what I know will be an incredible experience. Things are already falling into place so wonderfully! Thank you for all of your support!

Jessica, I'm so glad that those arrived on the same day! Sheila and I have never met and live far from one another, but we were able to coordinate well for Jordyn. The skirts are absolutely beautiful, and I'm so glad the shirts match as well as they do!

My prayer is that this entire trip is a blessing to your family. Jordyn is a beautiful little girl, your family is beautiful, and I wish you the best that life and Disney have to offer you.

Darla

It ended up perfectly! You two work very well together, that is for sure!

Thank you so much for the outfits and for the prayer! We really appreciat it all!

I just found your pre trip report through the link on Facebook. I am so excited for your beautiful family to go on your trip! I know you will have a great time (and be be the best dressed family at the world). Ruth

Thank you so much! We are getting really excited! It honestly still seems kind of surreal, but I am sure it will feel more and more real the closer it gets. We will definitely be the best dressed family with all these amazing people helping out!