Thank You!!!! & Ehlers -Danlos Syndrome Awareness

Mark and I want to say Thank You for all the loving support you guys have shown us.We have received such loving,compassionate and encouraging emails from many of our family and followers. It is so nice to know how much support we really have even if we are a million miles apart from each other.

This is what the boys do in the morning while waiting for the bus. Mark is not singing today just humming in the background.

We unfortunately had to break down and put Mark back on meds again.Things just got too scary for us all. It was becoming a matter of his safety and others too. It is really sad that we had to do this but we know its what works best for him. His school work was suffering too.

Unfortunately medication cannot fix all things for him.His motility is really giving him issues.He is in constant pain and discomfort daily. July cannot come soon enough for his appointment with the Motility Team at Cincy. He had another virus this weekend which led to another shutdown for him. His appetite is decreasing again too to the point of him only eating 1 meal a day sometimes even nothing but liquids. His headaches are not getting any better either.

Broc is dealing with another ear infection. This past weekend was really miserable for him. He is on ABX for it which is really messing with his tummy too. Both boys have been dealing with really bad reflux too.

This week the boys will have another dental appointment. This is what happened the last time.

 Mark was okay afterwards but Broc was out for a very long time afterward. He doesn't do well when he has general anesthesia and now we found out that laughing gas knocks him out too.

This month is Ehlers-Danlos Syndrome Awareness Month. This is a disease that myself and the boys have been dx with. Here are 3 fact sheets which explain it really nicely.

This is something that the boys and I deal with on a daily basis but it doesn't stop us from living our lives to the fullest and having fun a long the way. I am teaching the boys to rest when they need to but also to never give up.

Thank you for all your loving support.