Duchenne Girl

It has been awhile since I posted and we have had numerous updates. Mesa has been started on Emflaza for her steroid. So far we have not had any behavioral outbursts or increase in her appetite. We have not noticed any increase in her strength, but I am hopeful that the Emflaza steriod will allow…

We started heart medication the other day. I guess that the current preventative medicine is to start an ace inhibitor at 10 years of age to help with heart muscle longevity. Mesa’s cariologist started Lisinopril. She is 9 years old, but given that 1. She had a slight increased dilation to her ventricle prior to…

I got a call from school today that Mesa had an accident on the playground. There was not an acute injury that she cried with, but when she stood up from getting off the play structure she did not want to put her weight on her right leg. She would use her toes to balance,…

Today I had a fairly normal day. I was able to go to work and not feel weighed down. Mesa had one meltdown at school because she felt like her sister was giving her Valentines away. When I picked her up they brought her out to the vehicle like usual. She hopped right out of…

Day 5 and I am finally beginning to feel a little normal again. I woke up without a lump in my throat and without pressure on my chest. I went to work and was able to concentrate well on cases and interact with staff like normal. When I got Mesa home I helped her into…

Yesterday was a hard day. Day 4 after her offical Duchenne diagnosis. I managed to get through work with out a panic attack, though is was lingering there all the time. A wonderful client told me we would be in her thoughts as she had seen my Facebook post. I had to choke back tears…