Niy goes to CHOP permanently!!!
Donation protected
LET'S SEND ANIYAH TO CHOP (CHILDRENS HOSPITAL OF PHILADELPHIA) For Good!!!
The UPDATED story...
Aniyah Renee' is our 17 month old little princess. She is so special that she couldn’t wait to see the world, and was born via emergency c-section one month (at least, doctors are still unsure) earlier than her expected due date. Born with low blood sugar, low oxygen levels, and obstructive breathing, the doctors kept her in the Neonatal Intensive Care Unit at Mountain View Hospital in Las Vegas, Nevada, for a full month. During her stay, she struggled with apnea episodes, weight gain, eating and breathing simultaneously, keeping up her oxygen levels, and hearing exams. Aniyah was released home at 6 pounds with a myriad of monitors and medications. Between then and now Niy has been to more doctors and procedures than I have been through my entire 25 years of life. Two hernia repairs, three laryngoscopies, a tracheoscopy, a fundoplication, Supraglottoplasty, a g-tube insertion, CAT scans, blood tests, genetic testing, scheduled MRI's, physical therapy, occupational therapy, speech therapy, 10 doctors and counting.... our baby girl has been through it all.
Aniyah is was on continuous oxygen 24/7 as well as a pulse oximeter to keep her above 92% oxygen. After many tests and trials, she has been diagnosed with Laryngomalacia, tracheomalacia, Sleep apnea, stridor, obstructive breathing, microcephly (small head circumference), low weight gain/loss, failure to thrive, ptosis, asthma, and a genetic abnormality.... with more test planned to find out more. The genetic abnormality causes slow development cognitively and physically, a small body stature, microcephly, scoliosis, muscular skeletal issues, and a myriad of things yet to come. Because of these medical issues, I had to quit my job to take care of her at home, being as there are no child care facilities that can accommodate her needs. Her father has taken on two jobs, often working 18 hour days, just to get us by but he misses out on everything regarding her life. On top of just being new parents, full-time students (Nursing Major for me, and Accounting Major for her father) all of these medical issues and procedures have been a devastating financial blow for our family. I was blessed with the opportunity to work at an OB/GYN office since October of 2016. I loved the job and my physician that I worked for. Because of Niy's unpredictable health, my job had been jeopardized because of me having to miss work.
Today....
Niy is currently in the hospital in the Pediatric Intensive Care Unit in Sunrise Children's Hospital. On Friday, March 17th, 2017, Aniyah was having trouble breathing and began to turn blue while at daycare. We gave her an albuterol breathing treatment and oxygen and she began to breathe normal again. After consulting with her Lung Specialist, he advised us to go to the hospital if her breathing became labored again. Later on that day, she had trouble breathing again. We took her to the hospital, she became upset and her breathing became alarming. They rushed her into trauma where, at one point there were 19 medical staff in the room just for our baby girl. After about 45 mins of pure chaos, she was taken directly to the PICU. There they incubated her, sedated her, and gave her paralytic so to keep her from moving. After many labs, tests, and exploratory procedures, we found that Niy had an infection in her lung called Moraxella Cararrhalis or Mcat for short. This infection caused excessive mucous and inflammation in her airway. It was so bad that the breathing tube that was helping her was now becoming a problem by wearing down her tissue in her throat to the cartilage. Because of this, today, March 23rd, 2017, Aniyah will be undergoing a surgery called a tracheostomy. This will create an opening in her throat and neck for her to be able to breath through so her airway can heal without irritation. This is quite a big surgery for her, for she will not be able to talk, feed by mouth, or make noises. It will be something we will have to work with and learn how to accommodate her needs.
Why we need your help...
Even though Las Vegas has tried their hardest to find us answers and care for our princess, there has been entirely too many instances where the ball was dropped in communication or finding answers to our concerns. We (the parents) are originally from Pennsylvania and are very aware of the excellent care of places like DuPont Hospital, Johns Hopkins, and of course Children's Hospital of Philadelphia that are all accessible and highly respected. Care in Las Vegas takes months to years (2 years for the waiting list for the geneticists) just to get in an appointment or diagnostic test. Aniyah needs care, answers, and an affective action plan right now to insure that she will thrive at the best of her abilities with all the help we can get her. This is why we need help moving our entire life to Pennsylvania for GOOD and get all the CARE and evaluations done from CHOP. I know that we can get REAL answers to what is going on with her body and a REAL action plan as to how we can help her thrive at her fullest. This donated money would go towards the entire permanent MOVE BACK TO PENNSYLVANIA FROM LAS VEGAS, NV. Niy will be under the complete care of CHOP Once we are cleared to fly after recovery time from her surgery.
All any parent wants is for their child to be healthy and to grow up and be the best self that they can be. I've prayed for Niy and her life before she existed. We just want her to be ok. We would really appreciate ANYTHING you could give. EVERY dolllar, nickle, and penny counts. It would mean the world to us and possible the difference in how Aniyah lives the rest of her beautiful life!! We would be eternally grateful for your donation and love all of the well wishes we get on this new journey for our little family.
Be Blessed Family and friends!
The UPDATED story...
Aniyah Renee' is our 17 month old little princess. She is so special that she couldn’t wait to see the world, and was born via emergency c-section one month (at least, doctors are still unsure) earlier than her expected due date. Born with low blood sugar, low oxygen levels, and obstructive breathing, the doctors kept her in the Neonatal Intensive Care Unit at Mountain View Hospital in Las Vegas, Nevada, for a full month. During her stay, she struggled with apnea episodes, weight gain, eating and breathing simultaneously, keeping up her oxygen levels, and hearing exams. Aniyah was released home at 6 pounds with a myriad of monitors and medications. Between then and now Niy has been to more doctors and procedures than I have been through my entire 25 years of life. Two hernia repairs, three laryngoscopies, a tracheoscopy, a fundoplication, Supraglottoplasty, a g-tube insertion, CAT scans, blood tests, genetic testing, scheduled MRI's, physical therapy, occupational therapy, speech therapy, 10 doctors and counting.... our baby girl has been through it all.
Aniyah is was on continuous oxygen 24/7 as well as a pulse oximeter to keep her above 92% oxygen. After many tests and trials, she has been diagnosed with Laryngomalacia, tracheomalacia, Sleep apnea, stridor, obstructive breathing, microcephly (small head circumference), low weight gain/loss, failure to thrive, ptosis, asthma, and a genetic abnormality.... with more test planned to find out more. The genetic abnormality causes slow development cognitively and physically, a small body stature, microcephly, scoliosis, muscular skeletal issues, and a myriad of things yet to come. Because of these medical issues, I had to quit my job to take care of her at home, being as there are no child care facilities that can accommodate her needs. Her father has taken on two jobs, often working 18 hour days, just to get us by but he misses out on everything regarding her life. On top of just being new parents, full-time students (Nursing Major for me, and Accounting Major for her father) all of these medical issues and procedures have been a devastating financial blow for our family. I was blessed with the opportunity to work at an OB/GYN office since October of 2016. I loved the job and my physician that I worked for. Because of Niy's unpredictable health, my job had been jeopardized because of me having to miss work.
Today....
Niy is currently in the hospital in the Pediatric Intensive Care Unit in Sunrise Children's Hospital. On Friday, March 17th, 2017, Aniyah was having trouble breathing and began to turn blue while at daycare. We gave her an albuterol breathing treatment and oxygen and she began to breathe normal again. After consulting with her Lung Specialist, he advised us to go to the hospital if her breathing became labored again. Later on that day, she had trouble breathing again. We took her to the hospital, she became upset and her breathing became alarming. They rushed her into trauma where, at one point there were 19 medical staff in the room just for our baby girl. After about 45 mins of pure chaos, she was taken directly to the PICU. There they incubated her, sedated her, and gave her paralytic so to keep her from moving. After many labs, tests, and exploratory procedures, we found that Niy had an infection in her lung called Moraxella Cararrhalis or Mcat for short. This infection caused excessive mucous and inflammation in her airway. It was so bad that the breathing tube that was helping her was now becoming a problem by wearing down her tissue in her throat to the cartilage. Because of this, today, March 23rd, 2017, Aniyah will be undergoing a surgery called a tracheostomy. This will create an opening in her throat and neck for her to be able to breath through so her airway can heal without irritation. This is quite a big surgery for her, for she will not be able to talk, feed by mouth, or make noises. It will be something we will have to work with and learn how to accommodate her needs.
Why we need your help...
Even though Las Vegas has tried their hardest to find us answers and care for our princess, there has been entirely too many instances where the ball was dropped in communication or finding answers to our concerns. We (the parents) are originally from Pennsylvania and are very aware of the excellent care of places like DuPont Hospital, Johns Hopkins, and of course Children's Hospital of Philadelphia that are all accessible and highly respected. Care in Las Vegas takes months to years (2 years for the waiting list for the geneticists) just to get in an appointment or diagnostic test. Aniyah needs care, answers, and an affective action plan right now to insure that she will thrive at the best of her abilities with all the help we can get her. This is why we need help moving our entire life to Pennsylvania for GOOD and get all the CARE and evaluations done from CHOP. I know that we can get REAL answers to what is going on with her body and a REAL action plan as to how we can help her thrive at her fullest. This donated money would go towards the entire permanent MOVE BACK TO PENNSYLVANIA FROM LAS VEGAS, NV. Niy will be under the complete care of CHOP Once we are cleared to fly after recovery time from her surgery.
All any parent wants is for their child to be healthy and to grow up and be the best self that they can be. I've prayed for Niy and her life before she existed. We just want her to be ok. We would really appreciate ANYTHING you could give. EVERY dolllar, nickle, and penny counts. It would mean the world to us and possible the difference in how Aniyah lives the rest of her beautiful life!! We would be eternally grateful for your donation and love all of the well wishes we get on this new journey for our little family.
Be Blessed Family and friends!
Organizer
Ashley Mone't Reese
Organizer
Las Vegas, NV