Rowan’s 2nd Birthday

This photo captures a moment of normalcy watching our happy little girl enjoy ice cream and presents with family and dear friends. ⁣

🎂Cupcakes & Ice Cream and BBQ (mac n’ cheese, green beans and baked beans) this year! After 8 months on the #GAPS diet, her gut seemingly had been healed and she was tolerating EVERYTHING with only occasional vomiting.⁣

🏠We were a family of 5 now, with 3 kids under 4. I was nursing her baby brother around the clock but no longer needing to make all baby food from scratch. She had recently started chewing soft foods but was not able to feed herself. ⁣

🧘🏼‍♀️She could sit unassisted but was still not crawling on all fours. She had a slow army crawl that she would use to reach a toy that had rolled out of reach. She was still receiving in home therapy 5-6x per week for PT, OT, and feeding and we also started seeing a Russian Dr. in Orlando focusing on #MNRI therapy. Dr. Masgutova has clinics in Orlando and Poland and we were very encouraged by what she could do for Rowan. ⁣

👩‍⚕️We had flown to Nationwide Children’s Hospital in Ohio and we’re being followed by a geneticist there. We had completed a whole exome test by this time, and still had no answers. ⁣

⁣ 💊After doing everything under the sun to avoid Miralax, we finally caved when the Nationwide GI doctor in told us she would have hemorrhoids if we didn’t put her on it. She took it daily and it was a constant struggle to get the dosage right. It was a bandaid that we wanted to be temporary while we searched for the cause/cure. ⁣

🎁 She was happy and still enjoyed letting us open the gifts in front of her.⁣

😔I remember feeling great sadness and the hope slipping away in the weeks approaching her birthday. I knew that she would not crawl, walk, or talk before two, and likely not before her baby brother but I was hoping we would see a miraculous milestone on her birthday like the previous year. The passing of another birthday with so many milestones not checked off and the disappointment I felt from trying to put her on MY timeline weighed heavily on me. ⁣