LVMom23
Mom on a Mission!
- Joined
- Feb 27, 2011
Table of contents at the end of this post
My youngest child, Hannah, was granted a wish through Make-A-Wish, and we are meeting with the granters on Friday evening, 2 days! I'm very anxiously excited, as I would really love to be able to take her and her brother and sister to WDW and stay at GKTW.
Hannah is 2-1/2, and she was diagnosed with neuronopathic Gaucher's disease when she was 5 months old. Basically, she is missing the enzyme the breaks down fat in her body so it accumulates in her spleen, liver, bones, lung, and the worst part, it accumulates in her brain and kills her healthy brain neurons. She gets treatment every 2 weeks to help break down the fat in her body, but it doesn't cross the blood-brain barrier which creates a progressive neurodegenerative neuromuscular problem.
She is an amazing, amazing little girl! Her first prognosis was 9 months, then 18 months, and now they are "We just don't know." She is full of smiles, loves her brother and sister, and is just an overall happy little girl. Developmentally she is at about a 12-month level globally, and she has been that way for about a year. She has lost some skills over the past few months, but we continue to work with her on rebuilding them.
She has become addicted to her iPad, and it has been fantastic for working on her fine motor movements. Her favorite toys are those with music and/or lights. Her Mickey Dancestar toy has gone through dozens of batteries since she got it for the holidays. She also loves watching The Wiggles, Elmo (only the songs), and yes, she is a Gleek (smiles hysterically during Glee's Ice Ice Baby and Bad Romance song). She loves looking at books, especially those that are board and foam with bright colors and pictures.
She has a trach and a g-tube, and her list of conditions because of her disease is sadly too long. Most significantly, she has a choreathetoid movement disorder, hypotonia, abnormal eye movements and nystagmus, ataxia, enlarged spleen and liver, and a few more.
Our goal for parenting Hannah every day is to make sure she feels loved with tons of kisses, happy, comfortable, and painfree. We know each day with her is an incredible gift, and I always feel intoxicated with her smiles and love.
Hannah's big sister, Abby, is going to be turning 7 in a month! She is definitely a girly girl, and she loves dressing up. She loves, loves, loves the disney princesses, especially Belle. She is the athlete in the family, having just completed her baseball season as the only girl on the team yet the one with one of the top hitting records! If she could outdoors all day long, she would.
Hannah's 10yo big brother, Ethan, is Hannah's hero. He comes into the room to talk and play with her, and she just lights up. He is very sensitive, incredibly smart, and charming. He loves Star Wars and Harry Potter, and he loves playing Wii, legos, and puzzles.
We really think that WDW would be an amazing experience for all three kids because just picturing Hannah's face during the parades and slow rides would be priceless! I would also love for her to get some one-on-one time with Mickey, Minnie, Donald, and Daisy just so she can see them and touch them in a non-rushed atmosphere.
I also want the kids to experience WDW in a way that they would not only be able to do it less rushed, but I want Ethan and Abby to also be treated like royalty. Because Hannah's medical needs are so extensive, there would be no way we could do a trip like this on our own.
So if you are still here, hello! I am a talker and a blogger. If you want to learn more about Hannah, you can check out our blog at http://www.littlemisshannah.com
Here are some videos of Hannah!
Learn more about Hannah's disease.
I'll update again after our meeting Friday evening!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Table of contents
~ Meeting with the MAW grant team
~ First step in planning!
~ Hannah and her Minnie
~ Tentative dates and reality check
~ Excitement mounting!
~ Planning anxiety
~ Meaning of this journal's title
~ Approval glitch?
~ It's official! We have dates!
~ Breaking it to the kids
~ Their response!
~ Creating Disney Memories
~ Oops! Wrong dates, but we get flight times
~ Flight questions
~ Big Give - Teaser!
~ Big Give - mommy2mrb
~ Planning do-able rides (plus older pic!)
~ Big Give - Ellenbenny
~ Big Give - Crissyjb
~ Little more planning and nursing woes
~ Big Give - Five gives teaser!
~ Big Give - Disneycp2002
~ Big Give - jcwill529
~ Big Give - mmiprender
~ Big Give - vbandrea
~ Big Give - Blyssfull
My youngest child, Hannah, was granted a wish through Make-A-Wish, and we are meeting with the granters on Friday evening, 2 days! I'm very anxiously excited, as I would really love to be able to take her and her brother and sister to WDW and stay at GKTW.
Hannah is 2-1/2, and she was diagnosed with neuronopathic Gaucher's disease when she was 5 months old. Basically, she is missing the enzyme the breaks down fat in her body so it accumulates in her spleen, liver, bones, lung, and the worst part, it accumulates in her brain and kills her healthy brain neurons. She gets treatment every 2 weeks to help break down the fat in her body, but it doesn't cross the blood-brain barrier which creates a progressive neurodegenerative neuromuscular problem.
She is an amazing, amazing little girl! Her first prognosis was 9 months, then 18 months, and now they are "We just don't know." She is full of smiles, loves her brother and sister, and is just an overall happy little girl. Developmentally she is at about a 12-month level globally, and she has been that way for about a year. She has lost some skills over the past few months, but we continue to work with her on rebuilding them.
She has become addicted to her iPad, and it has been fantastic for working on her fine motor movements. Her favorite toys are those with music and/or lights. Her Mickey Dancestar toy has gone through dozens of batteries since she got it for the holidays. She also loves watching The Wiggles, Elmo (only the songs), and yes, she is a Gleek (smiles hysterically during Glee's Ice Ice Baby and Bad Romance song). She loves looking at books, especially those that are board and foam with bright colors and pictures.
She has a trach and a g-tube, and her list of conditions because of her disease is sadly too long. Most significantly, she has a choreathetoid movement disorder, hypotonia, abnormal eye movements and nystagmus, ataxia, enlarged spleen and liver, and a few more.
Our goal for parenting Hannah every day is to make sure she feels loved with tons of kisses, happy, comfortable, and painfree. We know each day with her is an incredible gift, and I always feel intoxicated with her smiles and love.
Hannah's big sister, Abby, is going to be turning 7 in a month! She is definitely a girly girl, and she loves dressing up. She loves, loves, loves the disney princesses, especially Belle. She is the athlete in the family, having just completed her baseball season as the only girl on the team yet the one with one of the top hitting records! If she could outdoors all day long, she would.
Hannah's 10yo big brother, Ethan, is Hannah's hero. He comes into the room to talk and play with her, and she just lights up. He is very sensitive, incredibly smart, and charming. He loves Star Wars and Harry Potter, and he loves playing Wii, legos, and puzzles.
We really think that WDW would be an amazing experience for all three kids because just picturing Hannah's face during the parades and slow rides would be priceless! I would also love for her to get some one-on-one time with Mickey, Minnie, Donald, and Daisy just so she can see them and touch them in a non-rushed atmosphere.
I also want the kids to experience WDW in a way that they would not only be able to do it less rushed, but I want Ethan and Abby to also be treated like royalty. Because Hannah's medical needs are so extensive, there would be no way we could do a trip like this on our own.
So if you are still here, hello! I am a talker and a blogger. If you want to learn more about Hannah, you can check out our blog at http://www.littlemisshannah.com
Here are some videos of Hannah!
Learn more about Hannah's disease.
I'll update again after our meeting Friday evening!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Table of contents
~ Meeting with the MAW grant team
~ First step in planning!
~ Hannah and her Minnie
~ Tentative dates and reality check
~ Excitement mounting!
~ Planning anxiety
~ Meaning of this journal's title
~ Approval glitch?
~ It's official! We have dates!
~ Breaking it to the kids
~ Their response!
~ Creating Disney Memories
~ Oops! Wrong dates, but we get flight times
~ Flight questions
~ Big Give - Teaser!
~ Big Give - mommy2mrb
~ Planning do-able rides (plus older pic!)
~ Big Give - Ellenbenny
~ Big Give - Crissyjb
~ Little more planning and nursing woes
~ Big Give - Five gives teaser!
~ Big Give - Disneycp2002
~ Big Give - jcwill529
~ Big Give - mmiprender
~ Big Give - vbandrea
~ Big Give - Blyssfull