Hello Everyone,
I am new to this board, however, very greatful to have found it. I am slowly going through posts to get some really good information we may be missing.
Our daughter will be turning 5 in November, and just recently had her Make A Wish Discovery. We really were not sure what she would end up wishing for, as she had 4 very specific wishes. These wishes were wishes I am sure our fairy Godmother never saw coming haha. Our daughter wanted to shop at the grocery store Sobeys because she loves the meat and cheese trays
, she also was very dead set on buying her younger sister mickey mouse diapers, and she really wanted to take a walk around the block. However in the end she gave a wish to go to Disney and eat with the princesses.
About a week ago we got a call that her wish to go to Disney World had been adopted. They haven't confirmed specific dates but it looks like she will be there in November. they have told us that we will be staying at Give Kids the World.
Our Family consists of a family of 6 and 2 fur babies. Barry (my fiance), Ashley (that's me/her mom). Mikaela (older sister 10), Kaiden (brother 8), Then miss Emmah (4). and finally miss Peytyn (2).
Our story starts when Emmah was 2 weeks old and we found her blue and unresponsive. After a nights hospital stay they said possible sids but they weren't sure. Things continued to go downhill, she continued to quit breathing in her sleep, she wasn't growing, she was screaming and throwing up, at 9 months old we still had no diagnosis, but the placed a gj to help with the symptoms and also did a sleep study which determined she has central apnea and was having about 60 episodes an evening of stopping breathing. The older she got the worse the symptoms, unconscious spells, muscle pain, vision loss, migraines, sensory issues,heat intolerance,heart, blood and body temperature issues muscle weakness, mottled skin,hypoglycemia, the list goes on, At the age of 2 she was diagnosed with Dysautonomia. At the age of 4 we are still having multiple trips to the hospital a week. Then things continued to get complicated, after giving birth to Peytyn 8 weeks early, after her 3 week hospital stay in NICU she was home for 2 days when I was diagnosed with Choriocarcinoma and went through 6 months of intense chemo. Then after I was told I was cancer free, Peytyn's health continued to go down hill, to the point last march we almost lost her , she had a a feeding tube placed as well, and has been diagnosed with the same diagnosis as Emmah.
Since then our older 2 kids have been diagnosed with the same thing, although our oldest is maintaining it well on her own, her brother is struggling and facing a feeding tube as well.
So I can not wait till Emmah gets her reveal, it will be an exciting moment for everyone.
I guess I feel as though I really need alot of planning and advice, my parents are paying for their trip to come and help us, between tube feeds and meds, I am sure we wouldn't get very far.
I am in our packing list phase, I was thinking of ordering snacks etc online and having them delivered to Give Kids the World to make snack bags to take in to the parks. Do I need to order shampoos etc or is that provided.
So far I have list made for each person, a carry on, personal bag, and a suitcase. As well as labelled ziplocks for medications and liquids. I am so nervous of how we will get all our luggage and equipment there, we will have a stroller, wheelchair and a lot of luggage. Once again I am open to all advice and any info you have from a MAW or from Give Kids The World
Thank you for reading this and joining our Pre-trip MAW journey.
Ashley
I am new to this board, however, very greatful to have found it. I am slowly going through posts to get some really good information we may be missing.
Our daughter will be turning 5 in November, and just recently had her Make A Wish Discovery. We really were not sure what she would end up wishing for, as she had 4 very specific wishes. These wishes were wishes I am sure our fairy Godmother never saw coming haha. Our daughter wanted to shop at the grocery store Sobeys because she loves the meat and cheese trays
, she also was very dead set on buying her younger sister mickey mouse diapers, and she really wanted to take a walk around the block. However in the end she gave a wish to go to Disney and eat with the princesses. About a week ago we got a call that her wish to go to Disney World had been adopted. They haven't confirmed specific dates but it looks like she will be there in November. they have told us that we will be staying at Give Kids the World.
Our Family consists of a family of 6 and 2 fur babies. Barry (my fiance), Ashley (that's me/her mom). Mikaela (older sister 10), Kaiden (brother 8), Then miss Emmah (4). and finally miss Peytyn (2).
Our story starts when Emmah was 2 weeks old and we found her blue and unresponsive. After a nights hospital stay they said possible sids but they weren't sure. Things continued to go downhill, she continued to quit breathing in her sleep, she wasn't growing, she was screaming and throwing up, at 9 months old we still had no diagnosis, but the placed a gj to help with the symptoms and also did a sleep study which determined she has central apnea and was having about 60 episodes an evening of stopping breathing. The older she got the worse the symptoms, unconscious spells, muscle pain, vision loss, migraines, sensory issues,heat intolerance,heart, blood and body temperature issues muscle weakness, mottled skin,hypoglycemia, the list goes on, At the age of 2 she was diagnosed with Dysautonomia. At the age of 4 we are still having multiple trips to the hospital a week. Then things continued to get complicated, after giving birth to Peytyn 8 weeks early, after her 3 week hospital stay in NICU she was home for 2 days when I was diagnosed with Choriocarcinoma and went through 6 months of intense chemo. Then after I was told I was cancer free, Peytyn's health continued to go down hill, to the point last march we almost lost her , she had a a feeding tube placed as well, and has been diagnosed with the same diagnosis as Emmah.
Since then our older 2 kids have been diagnosed with the same thing, although our oldest is maintaining it well on her own, her brother is struggling and facing a feeding tube as well.
So I can not wait till Emmah gets her reveal, it will be an exciting moment for everyone.
I guess I feel as though I really need alot of planning and advice, my parents are paying for their trip to come and help us, between tube feeds and meds, I am sure we wouldn't get very far.
I am in our packing list phase, I was thinking of ordering snacks etc online and having them delivered to Give Kids the World to make snack bags to take in to the parks. Do I need to order shampoos etc or is that provided.
So far I have list made for each person, a carry on, personal bag, and a suitcase. As well as labelled ziplocks for medications and liquids. I am so nervous of how we will get all our luggage and equipment there, we will have a stroller, wheelchair and a lot of luggage. Once again I am open to all advice and any info you have from a MAW or from Give Kids The World
Thank you for reading this and joining our Pre-trip MAW journey.
Ashley
