Updated: Dec 15, 2020
Life has been turned a bit upside down for us in the last few months, but really who hasn't had their life changed in some sort of way this last year? Well, with each change we always fear that it may have a negative affect on the boys, however, Miles' will is one of superiority and strength. His determination is that of a warrior! His tremendous progress in both motor and verbal skills thanks to the angels (his therapy team) from St. Joe Hospital has continued to be unthinkable. My husband's company had lay-offs, like many of us have been experiencing, due to the pandemic, therefore I returned teaching full-time and Dustin gracefully transitioned into the position of caregiver with optimism and strength. It's times like these that I thank God that he has given me all the right people in my life to tackle any challenge. My school, my husband, St. Joe Hospital, my family and friends have been so kind, supportive and loving. We are now thriving and Miles' is truly the one person making the most growth from his "indomitable will." Still, we are dealing with some difficulties and working out our kinks like any other family experiencing change, however, our perspective is quite different than it may have been prior to the addition of our little superhero.
Well, leaving my boys, I am not going to lie was the most difficult change to date. I miss my them and getting Miles to all his therapies while having a toddler-who is not allowed in the hospital has been a challenge. We still have the most wonderful nanny that helps on Fridays, which makes Parker so happy. We’ve met families that have helped us with care for Parker. I miss his therapies and all the positivity at the hospital from the kiddos to the therapy staff, they make me so happy, optimistic and humbled, however, having my husband spend the quality time with the boys and really get to know the therapists/staff has been as rewarding. So, all in all, it’s been an adjustment but a good one thus far.
Let’s talk progress, Miles has progressed quite dramatically with Dustin, my husband. I am not sure if it is his ability to push Miles or the change in care-giving position, however, I’ll take it! Miles has been crawling (missionary style) all over the house. He can sit up on his own from his back or side and he pulls up on furniture to stand and play for several minutes. And he is currently walking with assistance and his SRO’s daily. Recently, he added walking in a harness to his Physical Therapy routine and I’m excited to see where it takes him. His speech continues to develop, and boy is his little personality showing! He says, "mama, dada, hi, bye and most of his vowels.” We are working on more purposeful speech and using alternative methods of communication. Hypotonia affects communication and feeding, because you use many different muscles in your mouth to create sounds, words and for eating. We have two upcoming appointments with the Opthamologist (Dr. Lopez-he is amazing) and the Cranio-facial doctor to address his potential Brown-Eye Syndrome and cranial size/posterior toungue-tie . Again, I look at these appointments/surgeries as opportunities to better Miles’ abilities, but it doesn’t lessen the fear of putting your child under athesthesia. We will need lots of prayer on these occasions.
All in all, I have really enjoyed watching our little man on the move. Him and his brother are really developing an intense bond. One that I could only have dreamed of. I believe that Parker, our 2-year-old, is aware of Miles’ difficulties as he missionary crawls alongside him laughing and encouraging him to follow along. His kind nature and empathy are something I hoped for and as I witness it, I thank God every single day. These two are truly Batman and Robin in the real-life form, giving hope to all those that need it. I can’t wait to see what the future holds for them.
The OG Batman and Robin :)