Jul 29, 2009

Addy's Health Update

Thank you to everyone who responded, either by posting a response, writing in her guestbook, emails, private messages, phone calls, facebook posts, or by passing this info on to others who were able to help. We've compiled a list of tests and things to talk to the doctors about. We really feel that there is a medical reason that makes Addy vomit all the time and that once we get the vomitting taken care of, the oral aversion will lessen and the feeding will be easier to accomplish.

A family friend, Mr. Hill, read my last post and he works at St. Vincent's Hospital. He passed along our info to a doctor at St. Vincent's who has spoken to a few other doctors about Addy's issues. Today, I received a phone call from Jenny, a nurse practitioner at St. Vincent's. She is involved with a team of professionals at St. Vincent's called the Aero Digestive Clinic which consists of a Speech Therapist, Nutritionist, Ear Nose & Throat Specialist, Surgeon, Gastroenterologist, Pulmonologist, Developmental Specialist, and a Genetics Specialist (I think that's all of them... forgive me if I've missed one). She said that they meet twice a month to discuss children who are seen by multiple specialists that have special cases so that all the doctors can discuss together and stay on track, working as a team! They will be discussing Addyson on Aug 10th, their next meeting. In the mean time, she said that Addy needs to be seen by Pulmonology, GI, and ENT to discuss things further. They'll also do an MRI of her brain to look for any developmental issues or other abnormalities. Since she'll have to be sedated for that test, they'll wait till all the other doctors see her and decide if there are any other tests they'll need to do while she's sedated, that way they can all get done at the same time.

Tomorrow, we'll see the Pulmonologist, Dr. Sufi.
On August 19th, we'll see the GI, Dr. Schaefer and the ENT, Dr. Haymaker.

I feel so excited that these doctors have reached out to help, as well as all of you great moms that have offered suggestions and support! Thank you Mr. Hill for taking the time to get this coordinated for us too!


Rachel said...

Hi, my name is Rachel and I found your blog in one of my endless Google searches. My daughter is also a Riley patient and has some very similar symptoms as your daugher. Anyway, I have no answers for you, but wanted to let you know that there is someone out there who shares your frustration.
Hugs to you and your daughter.

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