With ourboys 5k/10k coming up in a few weeks we would like to fill you in on what’s been going on around here. We are blessed to have friends and family who help us and support us in many ways. The mealtrain is a huge help to us, by generously offering to cook a meal for us it allows us to not worry about making something and be able to focus on other things around the house. We have been prayed for countless times publicly and many more times privately, which is humbling and uplifting all at the same time. We have also garnered much support from neighbors, school friends and teachers alike. We could not have made it this far on this journey without you.
Now the not so good news. Our boys are slowing down and changing. Brandon continues to struggle making it a full day at school without having an episode of some sort, we call them episodes because we are not sure they are seizures but they present in similar fashion. Anyone who knows Brandon and his personality would not recognize him during these episodes as he punches and kicks while grunting and growling. He sometimes is unsteady on his feet and spends much of his time outside of the home in his wheelchair. He has not attended a full week of school since early in the school year and he talks virtually non stop about his favorite things. Jeremy has also recently changed behaviors, as puberty sets in he has struggled with the typical adolescent growing pains which are completely magnified by his disease. He worries about having a girlfriend and what others think of him and he continues to struggle with sleep or should we say lack of sleep. He rarely sleeps more than a few hours overnight and sometimes wakes up multiple times during the evening and still manages to not fall asleep or take naps during the day. He has not attended school several times over the last few weeks and can’t seem to tell us why he doesn’t want to go. Some nights, like tonight, his stutter gets so bad it is difficult to understand what he is trying to say and he physically bends over backwards to get words out.
Even with all of this going on these boys constantly amaze us with their love of life, smiles, laughter and tremendous personalities. We are so blessed to be a part of their lives and share them with you.