This year I'm hoping to live life a little different. Slower, at my own pace, and in control. It seemed impossible before, everything that comes with having a child with a chronic illness has taken a toll on our "normal life". Its emotionally, physically and mentally draining. Many days I felt like a zombie, drinking coffee all day to stay awake, a glass of wine to help me sleep. It was impossible to ever get caught up with all my duties.
Towards the end of last year, I cancelled all of Brielle's appointments, not only was flu season creeping up, but I was just done, done wasting time. I felt guilty for doing it, after evaluating every specialist, and reasons why we go to them; I realized she didn't need to see them anymore or as often. It was the same ol conversations; in conclusion they can't do anything. There's no treatment, there's no cure, there's nothing anyone can do for Bri. I was wasting our time and their time. The specialists I decided to continue with are; pulmonary, cardiology, ENT, and her geneticist (only because he has dealt with other I-cell children before and is a great advocate) every six months or so. Her pediatrician we don't see very often, he is very good about avoiding Brielle coming into the office unless absolutely necessary, we usually just discuss care over the phone. I feel so much better, a huge load off my shoulders. It's made a big impact in our life believe it or not, I'm able to enjoy her more. Now we have her therapists come once a week; OT & PT, they are great and these therapies DO help her a lot.
Look how big my girls are getting!!! Lots of joy & drama with these 3 👧🏻👧🏻👧🏻
