August 2nd 2012

Wow its been awhile since I updated here. Well Eoghan is gone to Ireland with Nanny and will be back in 8 days. The time for his holiday is going fast. Maura is in the second swim class and I just might sign her up for the next round. Finnian is in the hospital again. He was having an increase in an "episode" so they brought him in to check it out and true to Finnian's nature he hasn't had one since going in. They were scary in a way as his heart rate would go up high really fast and sometimes come down as soon as the "episode" was over but sometimes it stays high for time. It needs to be figured out as we don't want to be harming his heart. He did have an episode that showed a seizure when his O2 dropped into the 60's we have been chasing that one for almost 4 years and that is one of the reasons we cannot leave home with out having a tank of O2 with us. now we just have to figure out how to treat it do we just do what we have been doing or do we play around with his meds? Joe had to take time off of work while Finnian is in the hospital. He either stays with him in the hospital or else he stays with Maura while I am down with Finnian. Normally my Mammy would take her and Eoghan but Nanny and Eoghan are not around for the next 8 days. Thankfully he has vacation and sick time at work and under the FMLA (Family Medical Leave Act)he can take the time off and get paid by using his vacation or sick time. Next thing we will be getting the kids ready to go back to school. Eoghan is doing good with his 2 books that he had to read over the summer. He has one finished and the overviews written on each chapter and he is working on the second book. Maura had her book read a few days after she go it. I guess she is more like Deirdre and myself I know we would prefer to read over doing laundry or house cleaning. Finnian will be having surgery on his legs sometime in late September early October. I know some question him having surgery but everything and anything we do for him is to help him live comfortably and as pain free as possible. He is on enough medications with out us having to add pain meds long term for something that could have been fixed with a surgery and some casting. Our goal is to get him to be able to bear weight on his legs so that it will be easier over all to move him and you know never say never but maybe we might be able to get him to shuffle along with a gait trainer (walker) once his ankles and hamstrings are taken care of.