Penelopes medical expenses
Donation protected
This is my daughter, my princess, Penelope June. She will be 4 years old in September. In early April of 2019, Penelope began waking up with puffy eyes and was not feeling like herself. This quickly evolved into swollen legs and belly as well. She was not drinking or going to the bathroom as much as she should. After seeing multiple doctors and two ER trips, she was admitted to USA Children's and Women's Hospital for several days where she was diagnosed with nephrotic syndrome- Minimal Change Disease.
This disease effects her kidneys and causes her to spill large amounts of protein into her urine. Her body then holds onto fluid, causing her to have swelling and/or pockets of fluid buildup in her abdomen. It can cause high blood pressure, high cholesterol, and an array of other deficiencies- we are still learning about them all. I had never heard of this disease until now, as I am told it is rare. We have to monitor her fluid intake and output by the ML, and we use prescribed test strips to check her protein output every day- I'm beginning to despise the color blue.
Penelope has been on prescribed steroids since her diagnosis. She seemed to recover intermittently. Any challenge to her immune system such as a cold or allergen would cause her to relapse briefly. Overall, things were looking good and her dose was able to be reduced to every other day. About two weeks ago, she began spilling protein again and started to swell. Her steroid dose increased in the following days. There was no improvement. On Thursday, July 18th, Penelope woke up with a fever, vomiting, and could barely breathe. We took her back to the hospital where she was admitted immediately. As I am writing this, on Sunday the 20th, we are still in the hospital. She had fluid building up AROUND her lungs, much like the rest of her body, as well as fluid IN one lung from pneumonia. She has been on IV antibiotics, IV steroids, and IV albumin (protein) infusions daily. Her fever is gone and she stopped vomiting, but she has only urinated about 3/4 cup since admission. Her kidney function is low and she is holding almost every OZ of fluid given to her. The nurses have even reduced the amount of fluid used to flush her IV port because she's not expelling it. She can barely move under the weight of her own little body. Penelope's normal/healthy weight is approximately 34lbs. As of this morning, she weighs 45lbs. She gained 1/3 of her normal body weight (in fluid) in less than two weeks. Even her peripheral vision is affected due to the swelling around her eyes.This is uncomfortable at best. In her own tear-filled words, "My body feels weird!" We are still waiting for her treatment to take effect.
About our family and financial situation:
Penelope lives at home with her father, Adam, her 6year old brother, AJ (little Adam), and myself.
Penelope's father, Adam, was diagnosed with Crohn's disease in 2015. He has had two surgeries and we still have medical bills from that. Adam is one of the most devoted parents I have ever known and I could not imagine a more caring husband.
Crohn's disease, however, can incapacitate Adam for days at a time. He is a committed full-time parent, and takes our children along to do odd jobs when he can to make ends meet, but cannot commit to earning a regular income. I have full-time employment and we live like a lot of people, paycheck-to-paycheck. Our medical expenses are sinking our ship that was barely afloat to begin with.
About our home:
The home we live in is a very old mobile home. My sister and I "renovated" it when we were 15 and 16. There was a lot of mold in the home when we started, and we were naïve in believing we had gotten rid of it. The home had always had a sort of "old musty" smell to it. From time to time, we had an unexplained urine-like odor that seemed to come from the air conditioners, even after cleaning or replacement. The home was poorly ventilated and dew would accumulate on the walls in certain weather. Adam has fixed a lot of our mistakes since he moved in, as he is meticulous and actually knows how to do home repairs. We recently discovered [after I stepped straight through the tile, concrete board, and sub-floor because of the damage] that we have a very established mold infestation involving several different types of mold. One of which, is toxic black mold. Every area in our home is affected, mostly my bedroom where Penelope has slept with me most of her short life. We discussed this with her doctor. Scientifically, there is not one specific or established cause for Minimal Change Disease, but it is generally accepted in the medical community that allergens or environmental toxins play a huge part in its onset and control. We may never know for certain if the mold exposure CAUSED her to develop this disease, but we know for certain it will have a direct effect on her ability to stay in remission if we can get to that point. Adam is home trying to repair an air filter and come up with a plan for when Penelope is able to leave the hospital [whenever that may be]. We do not know, yet, whether mold remediation is even an option due to the contamination level and general condition of the home. It is possible we will have to move. We are getting quotes from mold specialists to see how to proceed. We do not know how long we will be staying at the hospital.
Donations will go toward Penelope's hospital bills and medications, air filtration and dehumidifiers, temporary housing and mold remediation if it is found to be more cost effective than moving all together. ANYTHING helps!
If you are unable to donate, please, just say a prayer for Penelope that she reaches remission.
Note: The photos are from the time of her first onset in April. One is while we were waiting to leave, after she had "deflated" a lot. The one of her and her father is for comparison. Most people, even some nurses, who are initially unaware, look at her and think she is just very chunky. Some have even scoffed, seeing me help her out of bed like she's just a fat lazy kid. Then I show them her "normal" photos and they understand she is desperate, and smothering inside herself. I will upload photos from this "adventure" as soon as I have the equipment available to transfer photos. I will also be setting up a FB page dedicated to her journey so you may follow her recovery & see how your donations are helping her. I will update this account as soon as I have that information.
This disease effects her kidneys and causes her to spill large amounts of protein into her urine. Her body then holds onto fluid, causing her to have swelling and/or pockets of fluid buildup in her abdomen. It can cause high blood pressure, high cholesterol, and an array of other deficiencies- we are still learning about them all. I had never heard of this disease until now, as I am told it is rare. We have to monitor her fluid intake and output by the ML, and we use prescribed test strips to check her protein output every day- I'm beginning to despise the color blue.
Penelope has been on prescribed steroids since her diagnosis. She seemed to recover intermittently. Any challenge to her immune system such as a cold or allergen would cause her to relapse briefly. Overall, things were looking good and her dose was able to be reduced to every other day. About two weeks ago, she began spilling protein again and started to swell. Her steroid dose increased in the following days. There was no improvement. On Thursday, July 18th, Penelope woke up with a fever, vomiting, and could barely breathe. We took her back to the hospital where she was admitted immediately. As I am writing this, on Sunday the 20th, we are still in the hospital. She had fluid building up AROUND her lungs, much like the rest of her body, as well as fluid IN one lung from pneumonia. She has been on IV antibiotics, IV steroids, and IV albumin (protein) infusions daily. Her fever is gone and she stopped vomiting, but she has only urinated about 3/4 cup since admission. Her kidney function is low and she is holding almost every OZ of fluid given to her. The nurses have even reduced the amount of fluid used to flush her IV port because she's not expelling it. She can barely move under the weight of her own little body. Penelope's normal/healthy weight is approximately 34lbs. As of this morning, she weighs 45lbs. She gained 1/3 of her normal body weight (in fluid) in less than two weeks. Even her peripheral vision is affected due to the swelling around her eyes.This is uncomfortable at best. In her own tear-filled words, "My body feels weird!" We are still waiting for her treatment to take effect.
About our family and financial situation:
Penelope lives at home with her father, Adam, her 6year old brother, AJ (little Adam), and myself.
Penelope's father, Adam, was diagnosed with Crohn's disease in 2015. He has had two surgeries and we still have medical bills from that. Adam is one of the most devoted parents I have ever known and I could not imagine a more caring husband.
Crohn's disease, however, can incapacitate Adam for days at a time. He is a committed full-time parent, and takes our children along to do odd jobs when he can to make ends meet, but cannot commit to earning a regular income. I have full-time employment and we live like a lot of people, paycheck-to-paycheck. Our medical expenses are sinking our ship that was barely afloat to begin with.
About our home:
The home we live in is a very old mobile home. My sister and I "renovated" it when we were 15 and 16. There was a lot of mold in the home when we started, and we were naïve in believing we had gotten rid of it. The home had always had a sort of "old musty" smell to it. From time to time, we had an unexplained urine-like odor that seemed to come from the air conditioners, even after cleaning or replacement. The home was poorly ventilated and dew would accumulate on the walls in certain weather. Adam has fixed a lot of our mistakes since he moved in, as he is meticulous and actually knows how to do home repairs. We recently discovered [after I stepped straight through the tile, concrete board, and sub-floor because of the damage] that we have a very established mold infestation involving several different types of mold. One of which, is toxic black mold. Every area in our home is affected, mostly my bedroom where Penelope has slept with me most of her short life. We discussed this with her doctor. Scientifically, there is not one specific or established cause for Minimal Change Disease, but it is generally accepted in the medical community that allergens or environmental toxins play a huge part in its onset and control. We may never know for certain if the mold exposure CAUSED her to develop this disease, but we know for certain it will have a direct effect on her ability to stay in remission if we can get to that point. Adam is home trying to repair an air filter and come up with a plan for when Penelope is able to leave the hospital [whenever that may be]. We do not know, yet, whether mold remediation is even an option due to the contamination level and general condition of the home. It is possible we will have to move. We are getting quotes from mold specialists to see how to proceed. We do not know how long we will be staying at the hospital.
Donations will go toward Penelope's hospital bills and medications, air filtration and dehumidifiers, temporary housing and mold remediation if it is found to be more cost effective than moving all together. ANYTHING helps!
If you are unable to donate, please, just say a prayer for Penelope that she reaches remission.
Note: The photos are from the time of her first onset in April. One is while we were waiting to leave, after she had "deflated" a lot. The one of her and her father is for comparison. Most people, even some nurses, who are initially unaware, look at her and think she is just very chunky. Some have even scoffed, seeing me help her out of bed like she's just a fat lazy kid. Then I show them her "normal" photos and they understand she is desperate, and smothering inside herself. I will upload photos from this "adventure" as soon as I have the equipment available to transfer photos. I will also be setting up a FB page dedicated to her journey so you may follow her recovery & see how your donations are helping her. I will update this account as soon as I have that information.
Organizer
Rebecca Lee Lamarand
Organizer
Semmes, AL
