We are so overwhelmed by the love and support we have received from family, friends, and even people who we don't know personally! We feel at such peace knowing God is most definitely working things for the good and going before us. The tentative date is scheduled for January 20th and it is looking like we will be there for a week or maybe longer. The team has been great even just with communication and planning we are so impressed! They have a full gamut of testing planned for our stay. First will be rounds with the team and multiple clinic visits. Then a lot of laboratory work. Then following that there will be two outpatient testing procedures done, the first being an MRI with sedation to check her spine. They said that a spinal issue could be causing the GI issues. Next will be an upper GI series and possibly a gastric emptying test. The we will be admitted following these for
several procedures and surgeries that require heavier sedation. These will include (at least what we know for now) an endoscopy with biopsies, a procedure to change her g tube to a gj tube, Botox injections in her intestines and sphincter, and a test where they place tubing with sensors and feed her while it is in place in her GI tract. Hopefully these first rounds of testing will give us a diagnosis or at least put us a step closer to relief for Charlotte. As of now we are just praying and waiting. By far this has been the hardest season of this journey is the waiting. Charlotte is currently not tolerating feeds well. She constantly screaming and wanting to pull her tube because her stomach is just so uncomfortable and distended she's in so much pain. Even with medication and a suppository everyday she's still not really going to the bathroom. So her belly just keeps growing. She's
not sleeping well (neither are we). We do have okay days, and we do always have a good moment each day so we are holding tightly onto that and knowing this is just a season and that Cincinnati is going to do everything they can to help us. We ask that you continue to pray and please keep sharing our story to help Charlotte.
Charlotte was born at 34 weeks and stayed at Vanderbilt Children's Hospital for 3 wks before being released. At about 6 months her doctors noticed that she was not reaching developmental milestones. Originally doctors thought she had a stroke in utero, however after 12 months the family started finding out some answers. At the end of fall they found out the results of baby Charlotte's genetic testing. It came back that she does have a genetic mutation. This sweet baby has not grown in height or weight in over 10 months. Her little body cannot process solid foods to get the nutrition she needs. She was admitted to Vanderbilt Children's Hospital again to insert NG tube. Even with the permanent tube her issues are more serious than thought originally. She is distending and is not tolerating feeds well. She is now being sent to Children's Hospital in Cincinnati for further testing.
The cost of travel and loss of income for the parents will have a devastating effect on this precious family. With medical bills, medical equipment, and feeding tube formula the cost is mounting up. Insurance will not cover all cost. This is already having a financial impact on this family. Any donations would be greatly appreciated along with your prayers.
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