LoveTheseKids
Earning My Ears
- Joined
- Jan 18, 2009
Hi all. I'm going to see if I can do this. I'm new to the boards, but I have to try!
We will be at Disneyworld for Kate's Wish Trip the last week of Feburary!
Our cast members include:
Me, Dayna
My husband, Brian
Our kids are:
Charlie 8 (2nd grade) - our highly intelligent history buff, who knows more about the cold war, wwII, the civil war, animals and the presidency than most adults (this writer included, the Animal Kingdom will be hell for me as he lectures me on the animals and their habitats). He does get sidetracked by Star Wars, and he LOVES Mission Space.
Kate 6 (1st grad) The princess, she's smart, and VERY social (we call her the cruise director) and she loves all the rides and says she could never pick a favorite, they are ALL great. She is our horse lover, everything is all horses in her world.
Tommy 4 (turns 5 in 11 days, preK) He's our little clown, loves to laugh, joke, and has eyes that could pierce stone. He LOVES space mountain and Tower of Terror (which he began riding at 3...did I mention he's tall?)
We are a slightly unique family, all three of our children qualify for a Make A Wish. All three kids were born missing part of their immune system, and require GammaGard Liquid, which is basically human plasma that has been processed to remove the antibodies that they are missing (some people call their medicine IVIG). Charlie and Kate get it weekly sub-q, and Tommy gets his IV every three weeks. Both Charlie and Tommy have what can be described as immune related arthritis.
Our oldest, Charlie did his wish when he was 5, Kate 3 and Tommy 1, he also choose Walt Disney World. It was a good trip, fun, and very memorable, but we are VERY excited that this trip they are all older, more self sufficient, and will all remember it. When Charlie had his wish, he really NEEDED something to look forward to - he had a difficult year, with 2 hospitalizations, and was really struggling with what his disease meant to him.
Kate, now 6, asked to do the same wish as her brother, her memories are more of the village, which she LOVED, in fact, her wish was to go back to the Village, and go to the Animal Kingdom Lodge. Make A Wish has given her a 6 night, 7 day trip to Give Kids The World, and we have extended for 2 nights at The Animal Kingdom Lodge.
The timing of this trip could not be better for Kate. She has switched from the IV way of doing her medicine to the Sub-q way. Kate is a very private little girl, in so much as, she doesn't want her friends to know that she is different, that she is sick, that things are harder for her. It became a big issue because she was hospitalized for the second time for severe sinusitus, and needed a pICC line for IV antibiotics, and was cleared to return to school. She wanted to just pretend there was not a tube hanging out her arm, and that no one would notice.
She's struggling with who she is, and how her disease fits into that. She's only 6, and it seems soo young to struggle with such big issues. She's begun asking questions that break a mothers heart, like if God forgot her, or if she was being punished by being sick, shes asked questions about things like if she was born into another family if she would have been sick. I think, right now, she needs something to look forward to, and something to hang on to.
Kate is truly a beautiful child, which I think adds to how hard this all is - she looks perfectly normal, perfectly healthy, which makes others not understand what they go through (we call this the curse of looking good). We had a really hard time when the kids were being diagnosed to even get someone to listen to us because they didn't look sick.
Kate was actually our first child diagnosed. Shortly after I found out I was already pregnant with our youngest, and then, our oldest son was diagnosed (he was almost 3) and then we had Tommy, the baby, and he was diagnosed at 6 months. This is, of course, not what we planned for their life, but we are ever so grateful for the people who donate the plasma that becomes the kids medicine, glad that the medicine allows them to be able to do stuff like this.
Our family has had a huge love affair with Disney. We live in Southern California and spend a lot of time at Disneyland. It holds a very special place in our hearts, it's the place we always took our kids after their infusions when they were younger. My husband placed Kate's first infusion needle when she was just 20 months old, having her first infusion, and the nurses couldn't get the line (he's was a flight paramedic on a helicopter), it broke his heart to have to do that to his little girl, so the next day he took her to Disneyland, just the two of them, and was able to arrange a private meeting with Snow White for her, where Kate, then 20 months showed Snow White the 6 spots where her veins had blown the day before. We plan to go to Disneyland the day before we leave for Disney World, and my husband has some suprises up his sleeve for our daughter while we are there!
We're on our count down we leave in 24 days!!!
Did I get this right? We plan to go to all four parks, but will likely take it on the slow side - we won't stay late most days, as the kids ALL suffer from fatigue, especially the boys. Kate really wants to do the Bippity Bobbity Botique, and wants to just explore all the parks!
Dayna
I'm trying to figure out how to post a picture of the kids but in the mean time - my blog is www.lookthroughoureyes.blogspot.com
We will be at Disneyworld for Kate's Wish Trip the last week of Feburary!
Our cast members include:
Me, Dayna
My husband, Brian
Our kids are:
Charlie 8 (2nd grade) - our highly intelligent history buff, who knows more about the cold war, wwII, the civil war, animals and the presidency than most adults (this writer included, the Animal Kingdom will be hell for me as he lectures me on the animals and their habitats). He does get sidetracked by Star Wars, and he LOVES Mission Space.
Kate 6 (1st grad) The princess, she's smart, and VERY social (we call her the cruise director) and she loves all the rides and says she could never pick a favorite, they are ALL great. She is our horse lover, everything is all horses in her world.
Tommy 4 (turns 5 in 11 days, preK) He's our little clown, loves to laugh, joke, and has eyes that could pierce stone. He LOVES space mountain and Tower of Terror (which he began riding at 3...did I mention he's tall?)
We are a slightly unique family, all three of our children qualify for a Make A Wish. All three kids were born missing part of their immune system, and require GammaGard Liquid, which is basically human plasma that has been processed to remove the antibodies that they are missing (some people call their medicine IVIG). Charlie and Kate get it weekly sub-q, and Tommy gets his IV every three weeks. Both Charlie and Tommy have what can be described as immune related arthritis.
Our oldest, Charlie did his wish when he was 5, Kate 3 and Tommy 1, he also choose Walt Disney World. It was a good trip, fun, and very memorable, but we are VERY excited that this trip they are all older, more self sufficient, and will all remember it. When Charlie had his wish, he really NEEDED something to look forward to - he had a difficult year, with 2 hospitalizations, and was really struggling with what his disease meant to him.
Kate, now 6, asked to do the same wish as her brother, her memories are more of the village, which she LOVED, in fact, her wish was to go back to the Village, and go to the Animal Kingdom Lodge. Make A Wish has given her a 6 night, 7 day trip to Give Kids The World, and we have extended for 2 nights at The Animal Kingdom Lodge.
The timing of this trip could not be better for Kate. She has switched from the IV way of doing her medicine to the Sub-q way. Kate is a very private little girl, in so much as, she doesn't want her friends to know that she is different, that she is sick, that things are harder for her. It became a big issue because she was hospitalized for the second time for severe sinusitus, and needed a pICC line for IV antibiotics, and was cleared to return to school. She wanted to just pretend there was not a tube hanging out her arm, and that no one would notice.
She's struggling with who she is, and how her disease fits into that. She's only 6, and it seems soo young to struggle with such big issues. She's begun asking questions that break a mothers heart, like if God forgot her, or if she was being punished by being sick, shes asked questions about things like if she was born into another family if she would have been sick. I think, right now, she needs something to look forward to, and something to hang on to.
Kate is truly a beautiful child, which I think adds to how hard this all is - she looks perfectly normal, perfectly healthy, which makes others not understand what they go through (we call this the curse of looking good). We had a really hard time when the kids were being diagnosed to even get someone to listen to us because they didn't look sick.
Kate was actually our first child diagnosed. Shortly after I found out I was already pregnant with our youngest, and then, our oldest son was diagnosed (he was almost 3) and then we had Tommy, the baby, and he was diagnosed at 6 months. This is, of course, not what we planned for their life, but we are ever so grateful for the people who donate the plasma that becomes the kids medicine, glad that the medicine allows them to be able to do stuff like this.
Our family has had a huge love affair with Disney. We live in Southern California and spend a lot of time at Disneyland. It holds a very special place in our hearts, it's the place we always took our kids after their infusions when they were younger. My husband placed Kate's first infusion needle when she was just 20 months old, having her first infusion, and the nurses couldn't get the line (he's was a flight paramedic on a helicopter), it broke his heart to have to do that to his little girl, so the next day he took her to Disneyland, just the two of them, and was able to arrange a private meeting with Snow White for her, where Kate, then 20 months showed Snow White the 6 spots where her veins had blown the day before. We plan to go to Disneyland the day before we leave for Disney World, and my husband has some suprises up his sleeve for our daughter while we are there!
We're on our count down we leave in 24 days!!!
Did I get this right? We plan to go to all four parks, but will likely take it on the slow side - we won't stay late most days, as the kids ALL suffer from fatigue, especially the boys. Kate really wants to do the Bippity Bobbity Botique, and wants to just explore all the parks!
Dayna
I'm trying to figure out how to post a picture of the kids but in the mean time - my blog is www.lookthroughoureyes.blogspot.com
!!!
it was so sweet
. 
