We were aware McKenzie would face developmental and intellectual delays. So, we immediately took action in setting up occupational therapy and purchasing all the tools we (thought) would need to assist in her milestone accomplishments. The truth is, we found our expectations of milestones differed greatly from what we faced. Our celebrations weren’t because she sat up or started to crawl – but because she allowed us to hold her in a sitting position for longer than 3 minutes, because she allowed us to place her on her tummy for a short period of time (before her feeding tube would irritate her). Our milestones were just another aspect of being special needs parents.
We aren’t experts, but we are learning as we go. Nikki (mama) has been so good at helping McKenzie sit while ensuring her pacifier doesn’t fall. McKenzie begins therapy in the beginning of the year, we are anxious and excited to begin this journey with her. The therapist is a friend of my grandparents, this gives us great hope that a connection will be established and in return outcomes will be positive. Of course, this all depends on McKenzie’s time and health.
In November, Arnold Palmer Hospital performed a swallow study on McKenzie. The study is used to show any aspiration when feeding by mouth. McKenzie passed! We are beyond excited to begin the adventure of oral feedings again. The G-Tube (Feeding Tube) is wonderful for medication and ensuring she is gaining then proper nutrients and hydration, but oral feeding is so much fun with babies – we would be foolish to not take full advantage of any opportunity we are given to try! After following up with GI, we purchased our first high chair, McKenzie is a little tiny – but she will grow and this chair will allow her an upright sitting position which will also assist in swallowing.
McKenzie has been unable to enjoy tummy time during her recovery, this has put a strain on her development as she becomes restless on her back, but last week her cardiologist approved tummy time and McKenzie has loved it! We allow her 5-10 minutes at a time to avoid overstimulation, her biggest struggle is getting both arms from underneath her, but we know with time and practice – she will accomplish this and much more!