Long overdue

Wow it's been a long time since I have blogged. A lot has happened. The kids have been busy playing softball/t-ball. Our season started in March and we have been going non stop. Kenzie has been pitching great this season and is doing awesome. Aurora tired out for minors and made it. So she is having a ball learning. She is following in her sisters footsteps and pitching also. The boys are having a great time playing T-ball. I have been busy working on the board for the league so needless to say, we have something going on every night.
We finally got some good news on Aurora. Three months ago she FINALLY got a diagnose of MADA. Its a rare muscle disease that is only in 264 adults in the US. Since there are no case studies of this disease on children, her neurologist has had to go through hoops and the board of directors to get her treatment plan approved. She will be starting her treatments on May 1st. The nice thing about this treatment is that she will be taking a dietary supplement, the down fall is she will have to have her blood drawn once a month while taking it. We are excited to finally get somewhere and hopefully be able to help her control her pain. Trystan now is being seen by the same neurologist and he is undergoing testing to see if he has the MADA also. We will keep everyone posted on what we find out.