I’ve been wanting to be more active and post more. I want the opportunity to have another article published as well. It has been such a busy and very stressful couple of months. My daughter has been hospitalized twice in less than a month; between the last week of September and las week, she has spent two weeks in Children’s Hospital. I’d like to share that with all of you Mighties!
It has been a long time, a long time. I become a contributor with and have had a couple of articles be shared by The Mighty on platforms like Yahoo! Lifestyle. My published works "When Children Ask What's 'Wrong' With My Daughter Who Has Cerebral Palsy" and "How Back to School Is Different for Families of Kids With Disabilities" have been widely shared. Kerstin and I were featured on the cover of Montgomery Parents (Now River Region Parents) magazine where I was interviewed for the monthly Mom-To-Mom article. The photo shoot we had for the magazine cover blew my daughter's mind. She was a diva for days following. Then at the Special Needs Expo hosted by the magazine, Kerstin got the "royal treatment" and "celebrity status". Really big 'diva-tude'!
It has not been all smooth sailing. As I am writing now, I am thinking about an appointment I skipped out on for Kerstin today because of exhaustion; physically, emotionally, and mentally. It is not easy or cheap to take that 2-hour trip several times per month to various appointments at Children's. This would be the third appointment since she was discharged on October 1st. Discharged? Yes! Now, let’s go back to the last full week of September, the week following the Expo hosted by Montgomery Parents Magazine.
Expo day! Turns out the weather was not too hot; Kerstin was in a good mood; heading to work with mommy and gain some praises for being the celebrity cover girl. Things went well. Kerstin even managed to get a Target run in that beautiful Saturday. I made a few connections through my work, got to meet many families like our own; those raising a child or youth with a special health care need. She had just completed a round of a steroid burst 5 days prior and seemed to have been feeling better. The weekend was almost over and late that Sunday night Kerstin was not feeling well again.
I am still giving Kerstin her breathing treatments; I mean I am taking her puffs with her wherever she goes. I made sure to follow the schedule with the bursts she had just completed and continuing to follow her daily medicine regimen. Why was she not feeling well again? By Wednesday, Kerstin was not feeling well at all! It was scary. I sent my sisters a message letting them know that she was not feeling well at all. My youngest sister Joan is a nurse and immediately she asked me to relay to her what was going on, asking how Kerstin looked. The rest: cpaware.blogspot.com/2019/10/breathing.html
#CerebralPalsy #pulmonary #Epilepsy #Respiratory