So here we are... one month and a few days post-op and we have seen some amazing things. Our Myla June is doing very well. Some cool developmental things that most parents find fascinating, we find to be incredulous. She pulled herself up a couple of times. When she is standing, she now holds onto things for support and shuffles herself around. She actually made it around our coffee table twice today...commence baby proofing. She is doing some great imitation of movement. She waves hello; however, she typically uses her full arm and most of her upper body. She can do clap hands once in a while, and with her favorite football team playing some great football, we are working on "touchdown" for the big game. Myla's main mode of transport these days is her rolling. She made it completely across our living room to the door or more importantly, to where her toys are.
Lindsey has single handedly transformed our basement to a baby friendly playroom fresh with toys, foam alphabet/number tiles (thanks mom mom and pop), and bins for storage. I mainly stayed on the couch in my pajamas when this happened and consulted. I am an excellent and lazy consultant.
On to some frustrating and exciting news....We are strongly considering a full-time, intensive day treatment program to work on Myla's feeding. This is both exciting and scary. I wish we didn't have to "reteach" Myla how to eat, but now that her heart is fixed, there is no medical reason that she shouldn't be eating. She has good days and not so good days. A good day is when she takes about a tablespoon of baby food without a struggle. A bad day is when she is actively refusing to take anything, crying, pushing the spoon away, and turning away. As I have mentioned in many of my posts, the feeding tube continues to wear on me. As much as it was a means to an end to help our Beany grow and thrive, it really restricts our lives. We have to plan food shopping, driving, dinner, and doctors appointments around her feedings. Even though we have amazingly supportive family and friends (Faith Bass, you are amazing for taking on a crying Bean for an hour or so), we always hesitate to ask for babysitter volunteers because we know what hard work it is to care for her...and the tube is still a tube..It still sits in her tiny throat. It moves when she sneezes or coughs, sometimes causing her to gag and vomit. It bypasses the first stage of digestion, which is when saliva breaks down food initially. And finally, it opens....yes...as gross as it is, it can pop open. We typically discover this by a wet shirt, floor, couch with a nasty smell. Its kind of just like having a tiny hole that leaks stomach contents. Nasty.
Anyway, we have an appointment at the Feeding Clinic at St. Joseph's Children's Hospital in Pateron, NJ for February 1st for an evaluation. We hope to be admitted to their 4-6 week intensive day treatment program which is daily from 8:30-4:30. My next blog will be about the roadblocks that we are having with the insurance company when it comes to getting Myla into a different program. Thanks for reading.
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