I haven’t written much lately. I wish I had a better reason, but the truth is I’ve just been pouting. Throwing a month or two long tempter tantrum. We finally got a good swallow study (which I’ll share pictures of in a different post because Evie got a special surprise from her speech therapist!) that showed that Evie’s epiglottis (the part that closes to protect your trachea and lungs when you swallow) isn’t functioning properly. It could be that the muscles that control it are weak or the epiglottis itself may have been damaged by all the different things we’ve done to her.
And that’s where my temper tantrum really set in. You see, most of the issues we are dealing with right now are secondary issues caused by dealing with the primary issues. And it’s no one’s fault. No one did anything wrong or reckless. The only thing we’re guilty of is being optimistic when Evie was born. We gave her a chance to not need a trach, but the damage done during that time…well, we’re still dealing with it.
And that sucks.
And it makes me worry about what other problems we’ll see down the road as we deal with these problems. There are just so many things to keep in my brain all.the.time. What issues we’re dealing with right now, what issues need to be looked into, what issues are being monitored, what issues need to be watched for. And it’s this constant ‘fix one thing, break two other things’ cycle that gets frustrating. Evie isn’t frustrating. Just the lack of technology/advancements with fewer potential side effects.
We’ve actually had a good few months. The weather has been nice and Evie’s allergies FINALLY got under control. The girls BOTH attended a little dance clinic, though Evie didn’t participate much until the very end.
Of course now we’re paying the price for that little excursion into normalcy and Evie is sick. She’s handling it pretty well this time. Usually our first sign of sickness is oxygen use at night, but we’ve only put her on a tiny amount to just help lessen the dips when she starts coughing. I’m hoping she’ll start improving today and we can avoid the hospital altogether.
We head back to Cincinnati in August and we’ll see how things look in her airway and lungs. Thank you for all the prayers and I apologize for the lack of updates. Usually, no updates means things are going well and we’re just living life.