It has been awhile since our last post, and a lot has happened. We received confirmation that Elliott does indeed have RCDP. She has had two surgeries, developed reflux, lost and gained weight, and added two new therapies to her schedule (now she has physical, occupational, feeding, and developmental therapies). Fortunately, she was approved for Tennessee Early Intervention System (TEIS), which will help pay for all of her therapies until she is three-years-old. Thank goodness!
Elliott had cataract surgery on her right eye on July 15th and her left eye July 22nd. Both surgeries went well, though getting an IV in her was a struggle. During her first surgery, Elliott was pricked over 30 times in an attempt to place her IV. Thankfully, it only took them six tries for her second surgery. She now has glasses with a +19 prescription in both eyes. Finding her glasses was difficult; we had to find a special brand from the UK called “Comobaby” because nothing else was small enough to fit her face. Initially, she hated wearing them but she is starting to get used to them.
Shortly after her first surgery, Elliott began throwing up during or after her feeds. At first it was sporadic but eventually became a regular occurrence. Once she threw up so forcefully it came out of her nose and had a difficult time breathing which prompted a visit to the doctor. Elliott has been on Zantac for four weeks and still throws up. It seems as though she has figured out that feeding is what causes her to throw up, as her feeds have gone way down. Last Monday, she started taking Prevacid in addition to Zantac. So far, the frequency with which she throws up has significantly decreased. Hopefully Prevacid is our miracle drug because the other options are not as appealing (NG tube, different formulas, etc.). After her surgeries, Elliott lost weight because she skipped multiple feeds and had a hard time staying awake after anesthesia. We have tried to get her to gain more weight but the reflux has made it difficult. She is hovering at a steady 6 lbs, 6 oz and is 12 weeks old.
Elliott’s days are consumed with eating, sleeping and her therapies. She has developmental therapy with WAVES, Inc. every Wednesday where we focus on meeting milestones with various exercises. She has feeding therapy every other Monday to work on meeting her goals (both consumption and weight gain). She continues to have occupational therapy every week and will start physical therapy at home on the 20th. Her limbs have become more limber, making it easier to do everyday tasks like putting clothes on her, getting in the car seat and bathing her. We do the activities from these therapies daily to help Elliott.
We received good news from Elliott’s cardiologist recently. She had another echocardiogram and her aorta has not thinned any more. We go back in four months for a follow up visit. Another success!
Brandy, Samantha’s mother, has been working hard to put together a fundraiser for Elliott and RCDP. At this point, the event, "Light the Way" will be held on October 11th. It will be a family-friendly, private event at the Eastern Flank Battle Park. There will be a suggested donation to enter and all of the extras will be a la carte. There will be food, live entertainment, kid-friendly activities and more.
A special thanks to Caitlin, Samantha’s sister, for watching Elliott throughout the day while Samantha goes back to work. We are trying to figure out our routine and Caitlin has been vital in helping us with Elliott.
We recognize that we have constant support from our family, friends, and friends of friends. We appreciate everything that has been done on our behalf and everyone keeping us in your thoughts. Elliott proves constantly she is a fighter and we are excited to see how she continues to grow.