Hello Angel!!! How old where you when you found out you had sickle cell trait? I was young, maybe 15 I think when I was told I had SC trait. My son Kai was diagnosed when he was 1 month old. I live in Florida and they do at-birth screening.
How is Kai dealing with school and sickle cell? School has already been real tough for him. They him to redo pre-school. I opted against it because I felt he didn’t need to start school already behind his peers. I quit my job when he started Kindergarten and volunteered as a classroom mom so I could keep an eye on him. We’re very fortunate to have a school that allows me to play such a hands on roll. I was allowed to sit with him during class. That way when he was in the hospital I was able to keep him up with the rest of the class because I was aware of the teachers, assignments and teaching methods.
He is so lucky to have you as his rock. Have you noticed sickle cell limiting Kai in any way? He has an older brother who doesn’t have the disease who is very active in sports. Unfortantely Kai cannot play sports due to the severity of his SCD.
I’m so sorry to hear that Angel. I too was held back from sports and it hurt my heart to see my sisters competing athletically while I was on the bench. What helps Kai get through a crisis? Music helps him. I’ve always brought soothing music whenever he’s had a crisis. I think it’s really helped him. One in particular he requests is the Hawaiian version of “Somewhere over the rainbow”
That is such a great song. Does Kai have regular pain (more than 2x a week)? He does– he is in constant pain. It’s usually either in his back or hips. It has caused him to rely on a wheelchair on really bad days.
What is his daily medication regimen and what medications does he take when in pain? They are thinking about trying him on Hydroxyurea again. Daily he takes Folic acid, Tylenol, Motrin, Lortab.
I know readers will want to know if you have considered looking into the bone marrow transplant for Kai? His brother might be a match and he’s young enough that he could do well with the procedure and be sickle cell free. Just a thought…I wish you and Kai well and the very best that life has to offer. Blessings.