terratalking
Earning My Ears
- Joined
- Nov 21, 2012
- Messages
- 36
SO EXCITED!!!
We found out Kendall was approved for Make A Wish yesterday after her doctor put in the referral when Kendall was discharged from a month-long stay in the PICU in August that nearly took her life.
So much backstory I need to fill in - but by way of quick intro -
Kendall is almost 5 years old and has battled mitochondrial disease since birth. She has lived in and out of hospitals her entire life, and along with the effects on her, her three older sisters are also thrown in that mix missing mommy, never knowing if sissy is really really sick, or just kind of sick.
Her list of diagnoses that have come as a result of mito is long and full of big words - but essentially, her GI tract is essentially shutdown, leaving her dependent on a central line (permanent IV) for nutrition and medication. Her bladder has sustained a lot of nerve damage and rarely functions appropriately anymore so she drains urine through a hole surgically created in her abdomen. She has a GJ tube in place through which some meds and some pedialyte is given in an attempt to keep some functionality and protect her liver. She has some developmental delays and is in physical and occupational therapy 3-4 hours a week.
Over this summer she suffered two back to back life-threatening sepsis infections and was in the PICU and intubated for weeks at a time. The first one had us all scared, but she bounced back amazingly.
when it happened again four weeks later, everyone was beyond scared that this would be it. Her bounce back was no less amazing, but it was much slower in coming. The last one took a lot out of her. Her doctor had to sit me down and have a very hard talk with me that Kendall will likely not survive another infection of this degree. The infections are coming from inside of her own gut - and there is not much we can do to prevent this from happening. We are doing what we CAN do though for her, and hoping and praying this buys us more time.
at the end of the day, that's all anyone really can ask for. More time.
As part of that conversation, her doctor said it was time to send her on her make a wish trip. All she has ever talked about is Cinderella, and more recently Ariel.
she watches those movies nonstop in the hospital, even when she is in a coma and intubated, we keep those movies playing so she can hear the music in her faraway dreams.
Right before she crashed this last time, her daddy was trying to keep her conscious, keep her talking so I could make it back to the hospital in time to see her and tell her i love her (we live three hours away from the hospital). Some of her last words to him at that time were "daddy, I just want to have red hair like Ariel. She's so pretty. I want to be just like Ariel!"
So when she recovered, and came home - red hair she got!
She tells people now that her name IS Ariel.
So even though I have been torn on what this really means - to qualify for a MAW trip - I am choosing to be excited for her, for my other girls. For the fact that we get this chance to be together and create awesome memories to last a lifetime. It is hard to even think that it may be our only chance at ever doing something like this. But I won't focus on that part.
I will focus only on the amazingness of this entire journey. That's why I wanted to start this pre-trip report early. So I can document every little part of it, have it to hold on to.
We have not even met with our wish granters yet - but I am positive Kendall's one true wish will be to go meet Ariel, swim under the sea with her, be with her, and spend as much time as possible in the Happiest Place on Earth.
I will try to do full intro's in a separate post - i'm afraid of losing all i've typed in this one and need to double check i'm doing the pictures right!
Thank you for reading - hope you'll join in on our PTR!
terra
We found out Kendall was approved for Make A Wish yesterday after her doctor put in the referral when Kendall was discharged from a month-long stay in the PICU in August that nearly took her life.
So much backstory I need to fill in - but by way of quick intro -
Kendall is almost 5 years old and has battled mitochondrial disease since birth. She has lived in and out of hospitals her entire life, and along with the effects on her, her three older sisters are also thrown in that mix missing mommy, never knowing if sissy is really really sick, or just kind of sick.
Her list of diagnoses that have come as a result of mito is long and full of big words - but essentially, her GI tract is essentially shutdown, leaving her dependent on a central line (permanent IV) for nutrition and medication. Her bladder has sustained a lot of nerve damage and rarely functions appropriately anymore so she drains urine through a hole surgically created in her abdomen. She has a GJ tube in place through which some meds and some pedialyte is given in an attempt to keep some functionality and protect her liver. She has some developmental delays and is in physical and occupational therapy 3-4 hours a week.
Over this summer she suffered two back to back life-threatening sepsis infections and was in the PICU and intubated for weeks at a time. The first one had us all scared, but she bounced back amazingly.
when it happened again four weeks later, everyone was beyond scared that this would be it. Her bounce back was no less amazing, but it was much slower in coming. The last one took a lot out of her. Her doctor had to sit me down and have a very hard talk with me that Kendall will likely not survive another infection of this degree. The infections are coming from inside of her own gut - and there is not much we can do to prevent this from happening. We are doing what we CAN do though for her, and hoping and praying this buys us more time.
at the end of the day, that's all anyone really can ask for. More time.
As part of that conversation, her doctor said it was time to send her on her make a wish trip. All she has ever talked about is Cinderella, and more recently Ariel.
she watches those movies nonstop in the hospital, even when she is in a coma and intubated, we keep those movies playing so she can hear the music in her faraway dreams.
Right before she crashed this last time, her daddy was trying to keep her conscious, keep her talking so I could make it back to the hospital in time to see her and tell her i love her (we live three hours away from the hospital). Some of her last words to him at that time were "daddy, I just want to have red hair like Ariel. She's so pretty. I want to be just like Ariel!"
So when she recovered, and came home - red hair she got!
She tells people now that her name IS Ariel.
So even though I have been torn on what this really means - to qualify for a MAW trip - I am choosing to be excited for her, for my other girls. For the fact that we get this chance to be together and create awesome memories to last a lifetime. It is hard to even think that it may be our only chance at ever doing something like this. But I won't focus on that part.
I will focus only on the amazingness of this entire journey. That's why I wanted to start this pre-trip report early. So I can document every little part of it, have it to hold on to.
We have not even met with our wish granters yet - but I am positive Kendall's one true wish will be to go meet Ariel, swim under the sea with her, be with her, and spend as much time as possible in the Happiest Place on Earth.
I will try to do full intro's in a separate post - i'm afraid of losing all i've typed in this one and need to double check i'm doing the pictures right!
Thank you for reading - hope you'll join in on our PTR!
terra
Ariel and Cinderella her comes Kendall!!! 
