This adorable 3 year old has the heart and spirit of a warrior. She has been in & out of the hospital and poked & prodded more than most of us will in an entire lifetime! Yet she still has a smile and sassy attitude that rivals any other 3 year old. She LOVES Mickey & Minnie mouse and knows ALL the Disney characters. Recently Taylor and her family was granted a VERY special trip to Disneyland courtesy of the ” Make a Wish” foundation. There she met up with her best friend Ryan and his family. Ryan has also been in & out of UCSF innumerable times. They have a very special bond and it was a real gift for these two to get together with there family’s in such a wonderful place! They were treated like royalty with their favorite Disney characters spending private time with the children.
Taylor’s doctors still have no conclusive diagnosis since she’s dealing with some very rare and complex issues.
You can follow her journey on http://www.caringbridge.org/visit/taylorbyrne
Taylor & Ryan
TAYLOR’S photo shoot at ADOBE PUMPKIN FARM!
After moving back to Petaluma, she got a new pediatrician in Santa Rosa and the first appointment she had with them, her doctor noticed it and just kept a close eye on it.
She got a bad cold for the first time at the beginning of September. Her doctor heard a lot of crackling in her lungs and noticed her cough was bad so she admitted her to Santa Rosa Memorial Hospital because she thought Taylor had Pertussis. After a couple tests and a chest x-ray, pertussis came back negative but she did have Pneumonia. When sleeping her oxygen saturation levels went down in the 80′s so she had to be on oxygen. After 3 days we were able to go home. Her doctor started treating her for asthma by giving her albuteral through a nebulizer and a couple other medicines that would help with asthma, but every time she was seen the doctor kept hearing crackles in her lungs.
Not even a month later, Taylor got sick with a cold again. Each time she had these colds her breathing got worse than it was before and her oxygen sats were in the mid-low 90′s when awake. After going to the doctor twice a week for a couple weeks and she wasn’t getting any better, (even after she got over her cold), her doctor said she needed to be admitted into UCSF Children’s to have specialists look at her.
After a few days there we thought we were going to be able to leave that weekend until after her CT Scan we found out she has a lung disease that overtakes both lungs in the lower lobes called Interstitial Lung Disease. It is a very rare disease for babies, its commonly found in adults 50+ age. There are also different types of interstitial lung disease and the only way to tell exactly which type it is, she needed to have a biopsy done of the inside of the diseased part of the lung.
After the lung biopsy we found out she has Neuroendocrine Cell Hyperplasia of Infancy, also known as NEHI. It is a very rare lung disease and there are only about 200 reported cases. Along with NEHI she also has a very rare Laryngeal Cleft, (a cleft in her larynx) and Subglottic Stinosis, (narrow airway). She is having some GI issues since having the biopsy surgery and GTube surgery and will need a few more procedures to figure out what exactly is wrong. We are also in discussion with her ENT doctor to find out if she is going to need her airway surgically opened.
And here we are today. It has been a very long road for this little girl and unfortunately it isnt the end of it but she is such a trooper. Still happy and smiling as much as possible! With the love, support, prayers and thoughts from all of our family and friends, she will be able to get through this just fine! xo