I just spent 4 days with my sister and her family and I am so glad I did. I now have a much better understanding of the suffering my baby niece is experiencing and also the stress and worry my sister and her husband are going through. Sophie is three months old and has a disorder called infant reflux. As adults, when we hear that someone has acid reflux we think that all they need to do is stop eating jalepenos and take a tums. It is a much different experience for a baby, and for some babies, like Sophie it is an absolutely horrible experience. Sophie has something called Sandifer syndrome which is a syndrome associated with the infant reflux. In normal infant reflux the baby gets acid, has horrible burps, throws up,etc...With babies like Sophie the episodes mimic seizures and the baby turns blue. Everytime Sophhie has an episode she turns blue and Bonnie and Andy rush her to the hospital. She is such a beautiful perfect girl and we just cry every time this happens - which can sometimes be 6 times a day. Well, my brother-in-law, bless his heart took it upon himself to research what was going in because he was NOT getting answers from the doctors. What he found was that his baby was not getting the correct medication or the correct dosage. In essence he became a compounding pharmacist overnight, showed the doctor the research and she changed the course of medication for Sophie. And so far....SUCCESS. We have had almost 6 days with Sophie with no episodes and this is huge. I really had no idea what Bonnie and Andy were experiencing until I was with them over Christmas and now I have a much better appreciation. Sophie cannot be left alone ever because she may stop breathing at any moment. One of them has their eyes on her at all times and they are also watching a wonderfully active 4 year old. Sophie also sleeps with a monitor attached to her big toe to measure the oxygen saturation in her blood. If it drops below a certain point then the monitor goes off and everyone runs to her as fast as they can. In addition to the monitor, Andy has set up a video monitor because they have to watch Sophie in her crib. Bonnie and Andy take shifts sleeping so one always has their eyes on her. I left their home with a new found appreciation for their situation and a tremendous amount of love and respect for them both. They are absolutely grace under pressure and God certainly gave that baby to the right parents for love and care. They are incredible. I have always known Bonnie to be amazing and beautiful, but to watch her with her baby that needs so much care, and to see her still be attentive and amazing to her 4 year old. I have cried several times thinking about how my sweet sister has become such a strong mom. I have attached the website where Andy found the info about Sandifur syndrome. And thanks to all of my friends who have been so worried. Thank you and bless you.

Namaste

Brenda


http://www.marci-kids.com/