Out of school/Wonder Center

This morning we had the go ahead to take Taylor to school we got her dressed and as Christy began to feed her she started to vomit. We called Rosemary her RN to let her know we would be bringing Taylor today. We are kind of worried she may have contracted something at the hospital or the Dr. office since this Swine flu and regular flu are going around, even Taylor's pediatrician's son has the swine flu she told us that since the flu shots won't be available until mid October that she has been taking the only thing to treat it right now and that's Tamaflu (I hope I spelled it right) ,but since she isn't treating us I think she was hinting that we may want to take it as a "just in case precaution". But incase you were wanting to know Taylor seems to be doing fine she slept for a little while this morning and seems to be happy and healthy as can be!!!

Ambulance called for Taylor at the Wonder Center

Taylor's core temp. reached 92 degrees and her Pediatrician said for the Wonder Center to call the ambulance and have her taken straight to the ER. We arrived from the Greer area just as the EMS was about to leave, Christy told them she was Taylor's mom and she was going to ride wwith them' they told Christy we could just take Taylor ourselves because of Taylors head is so senstive and the ride was really rough. After numerous tests she was released to come home only to go back to the doctor at 8 am in the morning.

Hypothermic AGAIN!!!

Rosemary Taylor's daycare nurse just called and said Taylor's temp. is down to 92.1 degrees axillary. They have been trying to get her temp. up with no success so if in 30 minutes she hasn't gotten hr temp. up we will probably take her to the hospital.

More of Taylor's UTI diagnoises

Yesterday we went to Dr. Mcevoy to have a belly x-ray to make sure she doesn't have consistant BM's and Dr. Teague's office (Urologist) believes the constipation has contributed to her UTI"S, she called this morning saying everything is alright and just give her an extra dose of laxative every third day when she hasn't had a BM. Friday she has a renal Ultrasound to see if she she kdney reflux last one came out negative.

Urinary Tract Infection

This past monday Taylor was hypothermic and then she became lathargic. We noticed that she wasn't voiding as much as she usually does. When we got her back to regular temp. she became very active. So we went ahead and took her to preschool/daycare on Tuesday her nurse Rosemary heard some congestion in her chest so I went back and got her from school then we took her to the doctor and found she has her fourth UTI in the last year and half. Next week we have some tests scheduled for her to see if we cannot find out the causes.

The beginning of the surgeries

Since then Taylor has had an encepholcele removal it was filled with over 600ml of fluid and 1/3rd of her brain which also had to be removed, a G-tube (feeding tube) surgically implanted, cleft lip repair, a VP shunt installed, VP shunt revision, BMP Mastergraft, Crainoplasty, eye cleft repair, BMP Mastergraft II, Crainoplasty II, VP shunt revision II and one of her fingers had to be partially removed due to the Amniotic Banding. Taylor was born with most of her Frontal, both pariatial and most of her occipital bones missing. She also was missing most of her fingers and toes, a facial cleft which caused one of her eyes not to be able to develop completely and she is also blind. Even with all her medical issues she is the happiest child I have ever seen. She is the biggest cuddle bug around. She loves to laugh at the Andy Griffith Theme song and play patty cake.

Taylor's Journey

Let me start by telling you how Taylor's journey began. In the middle of fall of 2005 when my wife Christy was pregnant we were told that our child may have Down Syndrome, we were devastated. Dr. Lebel (OB-GYN) asked to go and see a maternal-fetal specialist the following day. The next day we went to see Dr.Gregg (Maternal-Fetal Specialist) after performing all of the test he said that the results were worse then previously thought, he said our child had Anencephaly caused by Amniotic Band Syndrome he then informed in his best medical opinion we would need to terminate the pregnancy because our baby wouldn't live more than a few days if it made it full term; after alot of prayers and consulting family and our pastor we decided that "if GOD has decided to give our child a heartbeat then it isn't our place to take it away from her. Fast forward to March 24, 2006 11:44am @ Greenville Memorial Hospital this is it here she is our precious daughter Taylor. The medical staff informed us that she would live for only a couple of hours due to her conditions. At 12:30 am on March 25, 2006 a nurse from the NICU came to my wife's hospital room and told us this was it the baby was about to die and wanted to know if we wanted them to bring her in the room with us so she could pass away with us, I told her NO I want you to do what you need to to keep her comfortable and everything they could to keep her alive. The next morning after very little sleep they brought our lil girl to us she was having trouble breathing and the medical staff didn't want to feed her because they said she could aspirate on the food. So we waited a little while and kept wondering if we should get the nurses to feed our daughter; Taylor our daughter stop breathing twice for several minutes we thought this was it, but she is a fighter and she started breathing again. After talking with my wife's nurse she told us that it is our decision and don't let the medical staff make our decisions for us if want Taylor to be fed then they would have to it. When Taylor started to get fed she started to get her strength and became very active. After Taylor was born the hospital released her five days later on hospice. After a few months had passed Interim transferred Taylor to Pediatric Home Health Care because she has defide the doctors diagnoises and was still alive and kicking. Then the home health care system in Greenville dropped all of the pediatric patients.