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Emmalynn’s Story

Emmalynn is our little princess. This is our journal as we search for answers.



Emmalynn Renee is our little meant to be princess.  She was conceived without trying, heck without knowing it was possible and yet here she is! She was born Jan 17th, 2010 weighing 8 pounds even and just beautiful! At nine hours of age she was admitted to the NICU for increased respiratory/heart rate and increased white blood cell count.  After 48 hours she was released because her cultures did not grow anything.  I kept saying to nurses and doctors that she just wasn't breathing right yet no one seemed to listen.  They kept telling me I was just being anxious, that all babies make noise but I just knew something was wrong. After 3 weeks of this I took her to an emergency visit with the on call Pediatrician and she stopped breathing at the appointment. The Pediatrician (who at the time was not our normal one) immediatly admitted her. She was in the hospital for 10 days and had an EEG (brain test-Emma passed with flying colors and continues to be developmentally ahead), EKG (heart test-she had 3 borderline issues but has now been cleared by her cardiologist) and lots of blood work done and still no answers. We left the hospital with the diagnosis of exagerrated periodic breathing (she stops for 10 seconds then takes 4-6 breathes then stops again-this happens ALL night). We hoped she would outgrow it however she is 5 months old now and just getting worse. She "honks" when she breathes, chokes severely while eating, has a really loud stridor (breathing noise) and has a milk protein allergy.  She is unable to lay on her back for any period of time as she has positional desaturations (her oxygen falls into the 80% range).  She had a sleep study done and had 242 events recorded in one night! She showed both obstructive and central apnea episodes. The doctor said she has the most abnormal study he has ever seen in a child with a healthy brain. Surgery right now is set up on the 28th of June with ENT performing a bronchoscopy with a possible easy fix (laser) to a tough fix (tracheostomy) as well as GI will be there to do biopsies of her esophagus and stomach to test for various things as well as expand on her allergy issues. She seems to be allergic both from an internal response and external response to various things. She has a rash almost all the time as well as bad stomach pain/diapers/gas.

We could use all the prayers we can get so send them our way.  Please note that the donate links on the right DO NOT go to Emma.

Latest Journal Update

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Parkers appointment went ok, he had several swollen, hard lymph nodes in his neck between five and seven mm big. Most are concentrated on his right side, the side he says owie the most on. We are doing an aggressive dose of antibiotics right now to see if it clears up. That being said we follow up on Dec 2 to talk biopsy. His labs don't show infection or inflammation in his sedimentary rate so it's wishful thinking this will work but since his lymph nodes aren't above 1cm and his labs are low but not too bad he wants to at least try this. He also said it gives time to coordinate with the pediatric surgeon for his hernias. He said that while it looks reassuring he says he can't tell us that it isn't something scary because it very well could be, that we aren't craZy to be worrying because he agrees something just isn't right. So for now we try to wait....in the meantime prayers for minimal side effects from all his new meds (steroids, two inhalers and this antibiotic) would be appreciated. One day at a time...

Love you all.