Karlyn’s Wish Is Coming True ***1st hair tutorial***

[bigdisgrandma]

I love pictures,especially the one with grandpa. the girls are soooo cute.

becca

Thanks, the grandpa picture is really one of my favorites. Whenever the girls come to visit, they want a shoulder ride to the car when it is time to go home. I am not sure what will happen as they get older.

Wow, what a great looking family. Karlyn is beautiful. I am so excited for you guys!!!

Thank you. I can't believe you have less than 20 days till your trip!

Love the pictures! It looks like they had fun at both events.

Did they ever...
Hope things are good these days for you at your new job.

 

[luvinyou]

Subscribing! I can't wait to get started on my part of the big give. Going shopping for it tomorrow!

 

[teresajoy]

Okay, here is a picture of our kid trippers,Brody, Karlyn, and Gabrielle. This was taken about a month ago. Both girls are missing most of their front teeth. http://
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This one is 13 of our 14 grandchildren all wearing Disney World T-shirts that Grandma and Grandpa brought back to them from one of our many trips. This was taken 5/2006.

As you can see, we have all shapes and sizes and hair colors! There is one more boy who was not born when this picture was taken and we have one more coming in January.

I know we will get better at this picture stuff eventually. I am usually not allowed to even touch the camera!

Denise

Gorgeous children!!!! For a minute there, when I looked at your picture of all the grandkids, I thought I saw Jham's Lily in the middle of the back row!! I had to look twice!!!

We too have been contacted by the DisBoutiquers to be part of a Big Give. My goodness, we are so amazed and thrilled. Karlyn's mom is filling out the forms right now. You know of course what this means...We are going to have to get a lot better at this picture thing!

Thanks to everyone for their kindness, thoughtfulness, prayers and comments. It makes the everyday difficulties seem not so glaring and the bumps in the road a little easier to take.

Oh and stop over and read AmberGreenawalt's PTR. Another great chance to cleanse your tearducts if you know what I mean!

Have a great afternoon.
Denise

I am so thrilled and honored to be able to be a part of this!!!!

Hi! Im a disboutiquer subscribing so I can see the customs "in action"!

What I would like to know from YOU is how did you find out who the next family was so far in advance of the "official" announcement?

Here are some pictures from the Hannah Montana concert on the 4th of July and the Make A Wish wagon from the Days of 47 horse parade this morning. As you can tell, a great time was had by all!

Karlyn and Dad

Karlyn

Karlyn, Grandpa and Gabby

Love it!!!

Ready to ride!

Karlyn's side of the wagon

Gabby's side
It was an all horse parade and was so much fun. The weather was perfect and we had a nice shady spot to watch the parade. (We just found out that the Make A Wish Wagon won 1st place in the Authentic Wagon division of the parade!) This afternoon, Karlyn goes to the Wishing Place and officially makes her wish!

Thank you for the pictures!!! It really is nice to see the kids!

 

[bigdisgrandma]

Thanks to all the disboutiquers. I guess this means that Lindsey and I are about to be banned from your thread! Ever since Shannon sent us the information sheet, we have wondered when it would be our turn. To you all, please know how much your efforts are enjoyed, loved and appreciated. I am so impressed with all that you do, not just for the Wish families but for each other and for your communities, families and friends. One group hug is not enough

If you need any more information or have any questions, don't hesitate to contact me.

By the way. The girls love anything Disney, princesses, minnie, pooh, whatever and Brody loves all sports and most all the disney characters. He loves Goofy sports, Mickey sports, NASCAR and believe it or not the Texas longhorns and the Dallas Cowboys. I was thinking this might be helpful to some of you folks.

Please have a marvelous day. I know ours is so much better because of you all.

Denise

 

[HeatherSue]

ETA: I thought I was subscribed, but you weren't in my subscription list! Ooops!

 

[luvinyou]

Thanks to all the disboutiquers. I guess this means that Lindsey and I are about to be banned from your thread! Ever since Shannon sent us the information sheet, we have wondered when it would be our turn. To you all, please know how much your efforts are enjoyed, loved and appreciated. I am so impressed with all that you do, not just for the Wish families but for each other and for your communities, families and friends. One group hug is not enough

If you need any more information or have any questions, don't hesitate to contact me.

By the way. The girls love anything Disney, princesses, minnie, pooh, whatever and Brody loves all sports and most all the disney characters. He loves Goofy sports, Mickey sports, NASCAR and believe it or not the Texas longhorns and the Dallas Cowboys. I was thinking this might be helpful to some of you folks.

Please have a marvelous day. I know ours is so much better because of you all.

Denise

You are definately banned! I finished Gabby's outfit today and will ship it by the end of the week! and I am glad to hear she likes princesses and pooh.

 

[bigdismom]

If you could not tell by the username I am Karlyns mom. As me and Bigdisgrandma were talking about about the DISboards we realized we had not posted anything on how we came to this wonderful world of Disney. So here is an abreviated story: Sorry in advance to anyone who cries

Our 7 year old daughter Karlyn was born with several very severe cardiac defects, due to a chromasome defect called Deletion 22Q or Digeorge Syndrome. The most sever being Pulmonary Artesia. To explain it in layman's terms she was born with no pulmonary arteries to feed blood to her lungs. She has several small vessel branches that supply the blood . The small vessels have never been sufficient to carry all of the blood and oxygen to the rest of her tiny body. She had her first open heart when she was only 4 1/2 months old where she suffered a major brain stroke. The stroke caused both major speech, and motor skill delay. Over the last seven years she has had 1 more open heart surgery and 8 minor heart surgeries. We have also endured countless hospital stays for respiratory distress. She has become very accustomed to having lots of trips to Primary Children's Hospital or as our other kids call it "Karlyn's Hospital". As Karlyn's little pulmonary vessels have struggled to provide the blood to the tiny blood vessels in her lungs her heart has become enlarged and the small vessels in her right lung have started to die. Leaving her with only 1/3rd of her right lung function. As her parents we have searched for every possible fix to her medical condition. We were told at her birth that she would never be a canidate for transplant due to the severity of her multiple medical conditions. We also knew eventually we would get the news that they had run out of things to do for her. Even though we knew the day would come as a parent nothing can prepare you to hear those words. We are very grateful to know that we still have time no matter how long it may be to make family memories with Karlyn and our other two children. The phrase "You should always live every day as if it were your last" has become more than just a saying to our friends and family.
We as a family are so greatful to have you in the process to help make our memories so grand. (and to feed our need for all things Disney!)

 

[luvinyou]

If you could not tell by the username I am Karlyns mom. As me and Bigdisgrandma were talking about about the DISboards we realized we had not posted anything on how we came to this wonderful world of Disney. So here is an abreviated story: Sorry in advance to anyone who cries

Our 7 year old daughter Karlyn was born with several very severe cardiac defects, due to a chromasome defect called Deletion 22Q or Digeorge Syndrome. The most sever being Pulmonary Artesia. To explain it in layman's terms she was born with no pulmonary arteries to feed blood to her lungs. She has several small vessel branches that supply the blood . The small vessels have never been sufficient to carry all of the blood and oxygen to the rest of her tiny body. She had her first open heart when she was only 4 1/2 months old where she suffered a major brain stroke. The stroke caused both major speech, and motor skill delay. Over the last seven years she has had 1 more open heart surgery and 8 minor heart surgeries. We have also endured countless hospital stays for respiratory distress. She has become very accustomed to having lots of trips to Primary Children's Hospital or as our other kids call it "Karlyn's Hospital". As Karlyn's little pulmonary vessels have struggled to provide the blood to the tiny blood vessels in her lungs her heart has become enlarged and the small vessels in her right lung have started to die. Leaving her with only 1/3rd of her right lung function. As her parents we have searched for every possible fix to her medical condition. We were told at her birth that she would never be a canidate for transplant due to the severity of her multiple medical conditions. We also knew eventually we would get the news that they had run out of things to do for her. Even though we knew the day would come as a parent nothing can prepare you to hear those words. We are very grateful to know that we still have time no matter how long it may be to make family memories with Karlyn and our other two children. The phrase "You should always live every day as if it were your last" has become more than just a saying to our friends and family.
We as a family are so greatful to have you in the process to help make our memories so grand. (and to feed our need for all things Disney!)

I am in tears imagining all that Karlyn and your family have been through. I hope you guys have an amazing time in Disney and create some memories you can hold for a life time!

 

[revrob]

Somehow this wasn't on my sub list either. Sorry! I'm subbing now!

 

[jham]

If you could not tell by the username I am Karlyns mom. As me and Bigdisgrandma were talking about about the DISboards we realized we had not posted anything on how we came to this wonderful world of Disney. So here is an abreviated story: Sorry in advance to anyone who cries

Our 7 year old daughter Karlyn was born with several very severe cardiac defects, due to a chromasome defect called Deletion 22Q or Digeorge Syndrome. The most sever being Pulmonary Artesia. To explain it in layman's terms she was born with no pulmonary arteries to feed blood to her lungs. She has several small vessel branches that supply the blood . The small vessels have never been sufficient to carry all of the blood and oxygen to the rest of her tiny body. She had her first open heart when she was only 4 1/2 months old where she suffered a major brain stroke. The stroke caused both major speech, and motor skill delay. Over the last seven years she has had 1 more open heart surgery and 8 minor heart surgeries. We have also endured countless hospital stays for respiratory distress. She has become very accustomed to having lots of trips to Primary Children's Hospital or as our other kids call it "Karlyn's Hospital". As Karlyn's little pulmonary vessels have struggled to provide the blood to the tiny blood vessels in her lungs her heart has become enlarged and the small vessels in her right lung have started to die. Leaving her with only 1/3rd of her right lung function. As her parents we have searched for every possible fix to her medical condition. We were told at her birth that she would never be a canidate for transplant due to the severity of her multiple medical conditions. We also knew eventually we would get the news that they had run out of things to do for her. Even though we knew the day would come as a parent nothing can prepare you to hear those words. We are very grateful to know that we still have time no matter how long it may be to make family memories with Karlyn and our other two children. The phrase "You should always live every day as if it were your last" has become more than just a saying to our friends and family.
We as a family are so greatful to have you in the process to help make our memories so grand. (and to feed our need for all things Disney!)

Thank you for sharing Karlyn's story with us! Yep, I'm a cryer This trip will be wonderful for your family I'll keep Karlyn in my prayers.

 

[revrob]

Where's the "pass the tissue" smiley?

Thanks for sharing your story!

 

[bex271]

you and your family deserve this trip so much and are going to have a great time.

becca

 

[Iluvmickeymouse!]

Thank you for sharing Karlyn's story with us. My heart goes out to you and your family. From what Denise has stated earlier in the thread...you are an amazing family, every single one of you!

 

[twinmum]

Thank you for sharing Karlyn's story - you have all been through so much. My heart also goes out to you. It is so hard to see your child/grandchil endure so much, I know.

How wonderful it will be to be able to enjoy this fun family trip together!

Alison

 

[GoofyDoo]

I appreciate you sharing Karlyn's story as well. What a testimony you are to making every day count. There is a little boy in my church with Digeorge's Syndrome, and I know the struggles the family has faced with him. He's doing well right now, though! I will be praying for Karlyn and her sweet family. You deserve to have the best time ever on this trip!
xo,
Amy

 

[bigdisgrandma]

Thanks to everyone for your thoughts, prayers and good wishes for us. I know it is hard for Lindsey to write about Karlyn, as it is for the other Wish tripper moms. When you put those things in writing, it makes them that much more real. On a day to day basis, you moms do so much, even without thinking about it, but it has such an impact on your family and especially your children who may have huge struggles to overcome. Like so many other families in this world, we have had some pretty tough things to endure recently but we keep on keeping on as you also do!

What a wonderful group of previously unknown friends we have found from so many places here. May you all, wish trippers, disboutiquers and others (even the lurkers because I used to be one ) be blessed for the good you do and the joy you bring to us all.

Have a great day.
Denise

 

[HeatherN]

Thanks to everyone for your thoughts, prayers and good wishes for us. I know it is hard for Lindsey to write about Karlyn, as it is for the other Wish tripper moms. When you put those things in writing, it makes them that much more real. On a day to day basis, you moms do so much, even without thinking about it, but it has such an impact on your family and especially your children who may have huge struggles to overcome. Like so many other families in this world, we have had some pretty tough things to endure recently but we keep on keeping on as you also do!

What a wonderful group of previously unknown friends we have found from so many places here. May you all, wish trippers, disboutiquers and others (even the lurkers because I used to be one ) be blessed for the good you do and the joy you bring to us all.

Have a great day.
Denise

Wow Denise, I couldn't have said it better.One day at a time is my motto, or in the words of Dory from Finding Nemo "just keep swimming!"

 

[GoofyDoo]

Thanks to everyone for your thoughts, prayers and good wishes for us. I know it is hard for Lindsey to write about Karlyn, as it is for the other Wish tripper moms. When you put those things in writing, it makes them that much more real. On a day to day basis, you moms do so much, even without thinking about it, but it has such an impact on your family and especially your children who may have huge struggles to overcome. Like so many other families in this world, we have had some pretty tough things to endure recently but we keep on keeping on as you also do!

What a wonderful group of previously unknown friends we have found from so many places here. May you all, wish trippers, disboutiquers and others (even the lurkers because I used to be one ) be blessed for the good you do and the joy you bring to us all.

Have a great day.
Denise

Very eloquently stated.

 

[bigdisgrandma]

Guess what came in the mail. Postcards from Disney World. Karlyn's was from Princess Aurora, Belle and Cinderella.

Gabby and Brody's came from their Pals at Disney

Then also today because I had a day off and was feeling compelled to sew, I bought a little fabric (18 yds) to make us all matching Hawaiian shirts for the trip. I must have lost my mind but I think they will be great. Karlyn chose the fabric because she just loves ORANGE today.

I'll let you know how things go.

I am off to the airport to pick up my husband. Hooray, I'll be able to sleep again now that he is home.

Have a wonderful weekend.

Denise

 

[jham]

Guess what came in the mail. Postcards from Disney World. Karlyn's was from Princess Aurora, Belle and Cinderella.

Gabby and Brody's came from their Pals at Disney

Then also today because I had a day off and was feeling compelled to sew, I bought a little fabric (18 yds) to make us all matching Hawaiian shirts for the trip. I must have lost my mind but I think they will be great. Karlyn chose the fabric because she just loves ORANGE today.

I'll let you know how things go.

I am off to the airport to pick up my husband. Hooray, I'll be able to sleep again now that he is home.

Have a wonderful weekend.

Denise

Love the pictures! You haven't lost your mind. You are just a Disboutiquer and you never even knew it!