EDS Appointment

So today was a very long day for everyone in the Nelson household. I would like to say especially for the 3 children but unfortunately when you have children who have reached their end, well, you have mommies and daddies who have also reached their end.

Today Addy and Brennon were seen by a genetic specialist to determine if like Emma they also had Ehlers-Danlos Syndrome (EDS). The appointment was over 2 hours long in a small un-cozy room with nothing "child friendly" about it. Just a reminder the Ehlers-Danlos type that Emma has is hypermobility. She can in many ways mimic the movements of Gumby. But this also means that with it comes joint problems and early arthritis. There were a few good things to come out of today's visit. We received some more helpful ideas and suggestions that will help Emma avoid a lot of pain later on life. So it looks like she will be starting some physical therapy and we were highly encouraged to get her going and keep her in swimming to strengthen her muscles which will help support her joints to keep them from wearing out so fast. Which is nice to get all this info on Emma today even though we weren't there to talk about her. Unfortunately I think the doctor was too "Impressed" with Emma (the doctors words, not mine). And she then used Emma to compare the other two kids too. Even though we had just been told that different people will have different responses etc to EDS. After looking Emma over she then moved on to Brennon who doesn't do well in these situations anyway. She briefly looked over the squirming and screaming 3 year old who was fighting her at every touch. Every time she tried moving his legs or hands he would use his mighty 3 year old strength to keep her from bending him. Which later she says she doesn't believe him to have EDS (well lets think about this here...your trying to see just how flexible he is which you cant because he won't let you bend him because your being really loud and in his face hmmmm...)
Then on to Addy, Now if you haven't seen Addy in motion this girl is also another Gumby sitting at the table strapped into her chair, legs under the table she'll just slide them out from under the table and scratch her ear. Okay she hasn't actually scratched her ear but her legs are up next to them. And in so many ways she is just as flexible as Emma and until today I even thought she was more so. But apparently Addy is also diagnosed as not having EDS, at least for now. She does however have a heart murmur and is going to be scheduled to have an echo cardiogram to see if there is a hole in her heart and to also just get a good look around and see how the muscles around her heart look. (because those muscles etc could show signs of EDS if they do then she will be re-diagnosed). Now I am just frustrated, not that my two youngest have been diagnosed as not having it but because I do question Brennon and I firmly believe that Addy does have it. But that because of it all they will not get the right support and treatment.

So needless to say after two hours of questions and a 10 minute exam for the kids by the actual doctor the Nelson household is exhausted and tired. But now those children are collapsed and sleeping soundly and its time for mommies and daddies to as well!