MommytoIsabel
Earning My Ears
- Joined
- May 27, 2012
- Messages
- 13
Hello All! Please forgive me as I navigate through the site, and figure out how to post pictures! I just recently found DISboards around a week or so ago and since then I have been hooked! We are in the process of feverishly attempting to soak in all of the valuable information that this site has to offer in order for us to make the trip extra special and comfortable for our daughter!!!
Our trip is coming up so fast, in about a week and a half! Talk about last minute! Our trip was granted and booked a few months ago by the amazing Make A Wish staff. Due to a bunch of life stuff, we just started planning our trip a few weeks ago! We are so thankful and so blessed to be able to be able to have our daughter take part in this once in a lifetime experience. We are excited to share our trip on this site for other Disney lovers! It is so wonderful to be able to read about other Make a Wish trips; I have gained much insight and have picked up some good advice (we will be buying one of those fan misters! haha)!
Now onto a little bit about our family and the special little princess who will be visiting her castle! My hubby, daughter, and I live in Oklahoma (my husband grew up here and I moved here from the Northeast). Our precious daughter is almost four (June 24)! She was born with a Congenital Diaphragmatic Hernia, a very serious birth defect. Her diaphragm did not fully form in utero, thus allowing her abdominal organs to move up into her chest cavity. The largest complication was that it restricted her lung growth due to crowding of the other organs not intended to be there. We remained in the Neonatal Intensive Care Unit for four months. This is the shortened version; Isabel had multiple surgeries, came down with Sepsis, intubated for around three months, etc...). The largest medical issue that resulted from Isabel's condition is a chronic heart disease called Pulmonary Arterial Hypertenstion which is secondary to her lung disease. Isabel was also diagnosed with Autism with a moderate to severe intellectual disability. Isabel is on oxygen (nasal cannulas) and has a feeding tube.
Pheww... It all sounds heavy and it really is. But at the same time Isabel is an incredibly happy girl and is always smiling and laughing. She started to walk independently last September and now there is no stopping her! Isabel thinks it is funny to run away from mommy, and I have a hard time keeping up! Isabel is nonverbal but loves to try and sing whenever there is music playing. She also loves water and rides! I know that Give Kids the World will be such a wonderful place for her to experience, and I have picked up so many ideas and suggestions from various threads I have been reading. We have made an itinerary, although I call it a very "flexible" one! It is so good to have a plan, but at the same time be comfortable with things not always going as planned! Isabel is doing quite well, but will need to take frequent breaks in the park. Of course we are planning on arriving at the parks in the morning as they open, but they will still be quite hot! We will definately utilize the special lounge at Give Kids the World!
This is definately a trip of firsts for Isabel! So I am excited and admitedly a little nervous at the same time. This will be our first vacation and Isabel's first plane ride. She will be on increased oxygen and a monitor (measuring oxygen saturations) for the flight. We are expecting her oxygen requirements to increase (as they do at higher elevations), and that is fine as long as everything stays stable. Of course, we do expect that everything will go well as her specialists believe that they will. We also hope that Isabel will be comfortable during the plane ride. We are making two stops (one in which we need to change planes) so that it can be coordinated with my mother's flight to Orlando from Connecticut. Isabel is not able to communicate verbally, so it is difficult to know when Isabel is overstimulated, scared, etc... This can be quite frustrating for her! Isabel also likes to be in constant movement (so as long as we keep moving we are fine!), whether it be in a stroller, car, or walking!
I want to thank everyone who has put so much effort into sharing their own experiences in order to benefit other trip planners. I hope that I can add to that with our experience on oxygen in the parks, plane, etc...
This is our web page for Miss Isabel: www.caringbridge.org/visit/isabelhoward
Our trip is coming up so fast, in about a week and a half! Talk about last minute! Our trip was granted and booked a few months ago by the amazing Make A Wish staff. Due to a bunch of life stuff, we just started planning our trip a few weeks ago! We are so thankful and so blessed to be able to be able to have our daughter take part in this once in a lifetime experience. We are excited to share our trip on this site for other Disney lovers! It is so wonderful to be able to read about other Make a Wish trips; I have gained much insight and have picked up some good advice (we will be buying one of those fan misters! haha)!
Now onto a little bit about our family and the special little princess who will be visiting her castle! My hubby, daughter, and I live in Oklahoma (my husband grew up here and I moved here from the Northeast). Our precious daughter is almost four (June 24)! She was born with a Congenital Diaphragmatic Hernia, a very serious birth defect. Her diaphragm did not fully form in utero, thus allowing her abdominal organs to move up into her chest cavity. The largest complication was that it restricted her lung growth due to crowding of the other organs not intended to be there. We remained in the Neonatal Intensive Care Unit for four months. This is the shortened version; Isabel had multiple surgeries, came down with Sepsis, intubated for around three months, etc...). The largest medical issue that resulted from Isabel's condition is a chronic heart disease called Pulmonary Arterial Hypertenstion which is secondary to her lung disease. Isabel was also diagnosed with Autism with a moderate to severe intellectual disability. Isabel is on oxygen (nasal cannulas) and has a feeding tube.
Pheww... It all sounds heavy and it really is. But at the same time Isabel is an incredibly happy girl and is always smiling and laughing. She started to walk independently last September and now there is no stopping her! Isabel thinks it is funny to run away from mommy, and I have a hard time keeping up! Isabel is nonverbal but loves to try and sing whenever there is music playing. She also loves water and rides! I know that Give Kids the World will be such a wonderful place for her to experience, and I have picked up so many ideas and suggestions from various threads I have been reading. We have made an itinerary, although I call it a very "flexible" one! It is so good to have a plan, but at the same time be comfortable with things not always going as planned! Isabel is doing quite well, but will need to take frequent breaks in the park. Of course we are planning on arriving at the parks in the morning as they open, but they will still be quite hot! We will definately utilize the special lounge at Give Kids the World!
This is definately a trip of firsts for Isabel! So I am excited and admitedly a little nervous at the same time. This will be our first vacation and Isabel's first plane ride. She will be on increased oxygen and a monitor (measuring oxygen saturations) for the flight. We are expecting her oxygen requirements to increase (as they do at higher elevations), and that is fine as long as everything stays stable. Of course, we do expect that everything will go well as her specialists believe that they will. We also hope that Isabel will be comfortable during the plane ride. We are making two stops (one in which we need to change planes) so that it can be coordinated with my mother's flight to Orlando from Connecticut. Isabel is not able to communicate verbally, so it is difficult to know when Isabel is overstimulated, scared, etc... This can be quite frustrating for her! Isabel also likes to be in constant movement (so as long as we keep moving we are fine!), whether it be in a stroller, car, or walking!
I want to thank everyone who has put so much effort into sharing their own experiences in order to benefit other trip planners. I hope that I can add to that with our experience on oxygen in the parks, plane, etc...
This is our web page for Miss Isabel: www.caringbridge.org/visit/isabelhoward
I hope that the plane ride isn't too stressful. I'm sure that everything will go just fine.
