#TeamCheyenneStrong
Donation protected
Hello! My name is Ashley Engelson and I've started this GoFund me account for my Niece Miss Cheyenne Marie. She was born on January 18th, 2016 at 5lbs 2 oz. She was born with these birth defects Hydrocephalus, Cerebral Ventriculomegaly, Partial Trisomy 8, Partial Trisomy 9, Club feet (both), Cleft Lip, Bilateral Cleft Palate, Feeding Difficulties, Chromosomal Balance Syndrome (Related to the Partial Trisomy 8&9), Oropharyngeal Dysphagia, Congenital Abnormalities, Born with Inflammation in her Right Kidney & Heart Murmur.
I recently made this GoFund me page due to the fact that the Home Health Agency we were referred to hasn't managed to keep or find a Nurse that is comfortable dealing with Cheyenne. We've had a few come to the house to meet Cheyenne but once they read her chart, they soon find it to be overwhelming. Natasha (Cheyennes Mother) is unable to work due to her breaking her pelvis and back in an automobile accident back in 2014, which she went thru 5 surgeries herself and had to learn to walk again after being bedridden for 6 weeks
& Adam (Cheyennes Father) works but granted they had to move back home with Kirsten (Natashas Mother) for assistance with Cheyenne. Kirsten recently lost her job due to the constant Doctors appointments Cheyenne has to attend to. Adams job is demanding and it's very seldom he is able to miss a day of work. Therefore, Income has been very tight.
Her doctors and the children's hospital is located 1 1/2 hours drive one way. The money would be used for transportation, medical expenses, and medical supplies and upcoming surgeries.
We have a long journey ahead of us. Though we are not entirely comfortable asking for help, it is something we feel we need to try in this difficult time. We appreciate all of your support and donations for Cheyenne. Thank you in advance and God bless you all!!!
Here is a timeline of how much she has progressed!
January
Cheyenne Marie was born on January 18th down at VCU, directly after birth she was transferred straight to the NICU. She had bleeding on the left Ventricle of the brain which now has resulted in some brain tissue damage. She underwent a lot of testing that day and only Natasha, Adam and her Grandmother were allowed to see her. She wouldn’t take a bottle and rapidly lost weight and ended up going to 4 lbs 4 oz which resulted in the Doctors taking the course to put her on an OG Tube. She was taking breast milk and Similac Iron with 24 Calorie as well as Antibiotics for her Kidney Infection & Heparin. She will then be monitored closely. On January 30th, Cheyenne was able to come home!!
February
February 1st, the home Nurse had to call the ambulance to the house due to the fact there was a possibility of Cheyenne having seizures or convulsions. She was then transferred to Mary Washington who then got her stabilized and then made the call to transfer her to VCU, considering Mary Washington isn’t equipped to handle her. She was admitted to VCU under the care of the Neurosurgeon. There was a brain ultrasound, a cat scan of the brain, as well as an EEG test done. The test results came back stating the seizure act like activities were not seizures itself but actually were from the brain development from the genetic disorders. She was then released on February 4th. During the month of February she started Physical Therapy for her Club Feet as well as an Early Intervention Development team would be coming to the house to assess her and enroll her in the OT/Speech Program. She also started going to the Orthopedics where they talked about casting her Club Feet. A visit was made to the Gastroenterology, which they wanted to see if a G Tube was necessary which thankfully wasn’t and she continued with the OG Tube.
March
The Month of March started of really well for Miss Cheyenne, she continued weekly PT. She also started her OT and Speech Therapy. A Kidney Ultrasound was done which found no infection. On the 16th they started casting her left leg which every week the cast would change to help reposition the foot itself. On March 22nd, they administered a Barium Swallow Test which would determine her swallowing abilities but unfortunately it came back that her swallowing ability was weak and when she swallowed she would aspirate. March 28th, she went to visit Neurology, her head continued to rapidly grow and the pressure showed slight increase. On March 29th, she was admitted back to VCU due to her feeding intolerance.
April
April 1st, during her hospital stay they put her under anesthesia to do an MRI. The results came back that there was significant amount of pressure and the fluid around the brain has doubled since birth. She came home April 4th, pending her surgery. She started attending the feeding clinic to evaluate her feed times/rate/dose/intake. She continued to have her cast changed weekly. April 11th, she went back in for a head ultrasound as well as another visit to her Gastroenterology. April 12th, another visit to Neurology and her surgery was scheduled for April 14th. On April 14th, she had her ETV procedure done. ETV/CPC is Endoscopic third ventriculostomy is a surgical procedure for treatment of hydrocephalus in which an opening is created in the floor of the third ventricle using an endoscope placed within the ventricular system through a burr hole.and choroid plexus cauterization. As she was still in surgery they also did her left Achilles tendon and fitted for braces. She was admitted until April 17th in PICU
May
During the Month of May, we met with the Genetic Counseling Team. We also had follow up appointments with Neurology & Orthopedics. We continue OT, PT & Speech Therapy. On May 20th, we had an appointment with Neurosurgery, which then resulted in them telling us that the ETV didn’t hold and she would have to have a shunt put in. May 24th, we were cleared from the Kidney Doctor with no future visits. On May 25th, she shad her Shunt Surgery on her left side. She came home the following day!
June
June was a great month with NO HOSPITAL STAYS!!!! She was progressing well and continued with her OT, PT, & Speech Therapy. A follow up with Neurosurgery on the 9th, the fluid has diminished and the pressure has since relieved. Her head is now growing at the rate of an average babies would. On June 13th, there was a visit to the Craniofacial Surgeon, which resulted with the date of her bilateral cleft repair on August 3rd, which had to be pushed back because she had a Sinus Infection previously and put on Antibiotics for 10 days.
July
ANOTHER MONTH OF NO HOSPITAL STAYS!!! She is continuing to make great progress and keeping up with her therapy. A visit to the Ophthalmologists was made and her right eye has a lack of muscle and both eyes have a lack of pigmentation. She does need eye surgery but it has since been put on hold with different techniques they have provided us with. She currently wears an eye patch 2 hours a day, rotating eyes every other day. She was then approved for feeding therapy at VCU, which will be started after the bilateral cleft repair, which will assist in her taking the bottle and weaning her off the OG Tube.
August 3rd is her Bilateral Cleft Repair Surgery
I recently made this GoFund me page due to the fact that the Home Health Agency we were referred to hasn't managed to keep or find a Nurse that is comfortable dealing with Cheyenne. We've had a few come to the house to meet Cheyenne but once they read her chart, they soon find it to be overwhelming. Natasha (Cheyennes Mother) is unable to work due to her breaking her pelvis and back in an automobile accident back in 2014, which she went thru 5 surgeries herself and had to learn to walk again after being bedridden for 6 weeks
& Adam (Cheyennes Father) works but granted they had to move back home with Kirsten (Natashas Mother) for assistance with Cheyenne. Kirsten recently lost her job due to the constant Doctors appointments Cheyenne has to attend to. Adams job is demanding and it's very seldom he is able to miss a day of work. Therefore, Income has been very tight.
Her doctors and the children's hospital is located 1 1/2 hours drive one way. The money would be used for transportation, medical expenses, and medical supplies and upcoming surgeries.
We have a long journey ahead of us. Though we are not entirely comfortable asking for help, it is something we feel we need to try in this difficult time. We appreciate all of your support and donations for Cheyenne. Thank you in advance and God bless you all!!!
Here is a timeline of how much she has progressed!
January
Cheyenne Marie was born on January 18th down at VCU, directly after birth she was transferred straight to the NICU. She had bleeding on the left Ventricle of the brain which now has resulted in some brain tissue damage. She underwent a lot of testing that day and only Natasha, Adam and her Grandmother were allowed to see her. She wouldn’t take a bottle and rapidly lost weight and ended up going to 4 lbs 4 oz which resulted in the Doctors taking the course to put her on an OG Tube. She was taking breast milk and Similac Iron with 24 Calorie as well as Antibiotics for her Kidney Infection & Heparin. She will then be monitored closely. On January 30th, Cheyenne was able to come home!!
February
February 1st, the home Nurse had to call the ambulance to the house due to the fact there was a possibility of Cheyenne having seizures or convulsions. She was then transferred to Mary Washington who then got her stabilized and then made the call to transfer her to VCU, considering Mary Washington isn’t equipped to handle her. She was admitted to VCU under the care of the Neurosurgeon. There was a brain ultrasound, a cat scan of the brain, as well as an EEG test done. The test results came back stating the seizure act like activities were not seizures itself but actually were from the brain development from the genetic disorders. She was then released on February 4th. During the month of February she started Physical Therapy for her Club Feet as well as an Early Intervention Development team would be coming to the house to assess her and enroll her in the OT/Speech Program. She also started going to the Orthopedics where they talked about casting her Club Feet. A visit was made to the Gastroenterology, which they wanted to see if a G Tube was necessary which thankfully wasn’t and she continued with the OG Tube.
March
The Month of March started of really well for Miss Cheyenne, she continued weekly PT. She also started her OT and Speech Therapy. A Kidney Ultrasound was done which found no infection. On the 16th they started casting her left leg which every week the cast would change to help reposition the foot itself. On March 22nd, they administered a Barium Swallow Test which would determine her swallowing abilities but unfortunately it came back that her swallowing ability was weak and when she swallowed she would aspirate. March 28th, she went to visit Neurology, her head continued to rapidly grow and the pressure showed slight increase. On March 29th, she was admitted back to VCU due to her feeding intolerance.
April
April 1st, during her hospital stay they put her under anesthesia to do an MRI. The results came back that there was significant amount of pressure and the fluid around the brain has doubled since birth. She came home April 4th, pending her surgery. She started attending the feeding clinic to evaluate her feed times/rate/dose/intake. She continued to have her cast changed weekly. April 11th, she went back in for a head ultrasound as well as another visit to her Gastroenterology. April 12th, another visit to Neurology and her surgery was scheduled for April 14th. On April 14th, she had her ETV procedure done. ETV/CPC is Endoscopic third ventriculostomy is a surgical procedure for treatment of hydrocephalus in which an opening is created in the floor of the third ventricle using an endoscope placed within the ventricular system through a burr hole.and choroid plexus cauterization. As she was still in surgery they also did her left Achilles tendon and fitted for braces. She was admitted until April 17th in PICU
May
During the Month of May, we met with the Genetic Counseling Team. We also had follow up appointments with Neurology & Orthopedics. We continue OT, PT & Speech Therapy. On May 20th, we had an appointment with Neurosurgery, which then resulted in them telling us that the ETV didn’t hold and she would have to have a shunt put in. May 24th, we were cleared from the Kidney Doctor with no future visits. On May 25th, she shad her Shunt Surgery on her left side. She came home the following day!
June
June was a great month with NO HOSPITAL STAYS!!!! She was progressing well and continued with her OT, PT, & Speech Therapy. A follow up with Neurosurgery on the 9th, the fluid has diminished and the pressure has since relieved. Her head is now growing at the rate of an average babies would. On June 13th, there was a visit to the Craniofacial Surgeon, which resulted with the date of her bilateral cleft repair on August 3rd, which had to be pushed back because she had a Sinus Infection previously and put on Antibiotics for 10 days.
July
ANOTHER MONTH OF NO HOSPITAL STAYS!!! She is continuing to make great progress and keeping up with her therapy. A visit to the Ophthalmologists was made and her right eye has a lack of muscle and both eyes have a lack of pigmentation. She does need eye surgery but it has since been put on hold with different techniques they have provided us with. She currently wears an eye patch 2 hours a day, rotating eyes every other day. She was then approved for feeding therapy at VCU, which will be started after the bilateral cleft repair, which will assist in her taking the bottle and weaning her off the OG Tube.
August 3rd is her Bilateral Cleft Repair Surgery
Organizer and beneficiary
Ashley Engelson
Organizer
King George, VA
Kirsten Lee
Beneficiary