Thank you for sharing in my journey.
Yes, that is a made up number. I don’t actually keep count.
My youngest is my medically fragile, special needs child. We met her in the NICU in Greensboro, NC when she was 1 1/2 weeks old and brought her home two weeks later. She was undiagnosed at the time, and remains undiagnosed. After spending two years with genetics, we gave up. No one has seen anything like her.
During the past (almost) 11 years, she has received multiple diagnoses and even more hospital stays. In the beginning, were the lung issues. She stayed on oxygen for the majority of her first five years. At 1yr old, she was diagnosed with immune deficiency. Thus started the long journey with immunoglobulin. After that, retinal dystrophy and CVI. Thus, she started attending the school for the blind. Next was stage three kidney failure. And our most recent diagnosis has been Diabetes Type 1 (back in Aug 2017).
Needless to say, life with E has been a rollercoaster ride IN THE DARK.
Of all her diagnoses, the diabetes has been the worst. I HATE DIABETES! Every day is a series of lows (sometimes as low as 28) and highs (often too high for the meter to read). Lots of shots, lots of finger sticks, locks on the pantry, yelling at my teenagers for leaving junk food on the counters, etc.
After talking to many others with diabetes along with her doctor, we decided to try out the OMNIPOD insulin pump. It’s supposed to make life easier, right? HA!!!
Started wearing it on Monday. (After two hours of training). Then had to train her nurses at her school. They’re nervous and want her to stay home with me until Wednesday. (Another challenge since it’s hard to get my tasks done with her around).. Tuesday morning, she pulls it off. We put a new one on. Wednesday, I take her to school. The nurses have to show the bus drivers how to suspend it in case of an emergency. In doing so, the nurse deactivates it 😡. Now put pod number 3 on her (did I mention that these are expensive and are supposed to stay on for three days?) Thursday, she pulls off pod. Now, four days….four new pods. FRUSTRATED
So, as a reminder to myself….
”But my God shall supply all your needs according to his riches in glory by Christ Jesus.” Philippians 4:19 (kjv)