Well finally I have gotten the time to sit down at the real computer (not just my phone) and give a update...
Jonathon: He has been invited to speak at the State House on Wednesday Feb 29th for National Rare Disease day which is so awesome. We finally just finished his speech which took us all weekend to write...but I like the final draft and that is what we are going to stick with! He is nervous but excited at the same time, we have another interview set up right after and couldn't be more excited!! He loves to share his story and get the word out there, and we will never pass up an interview about EB!!! Skin wise well that has been up and down like usual. He just had a lot of mouth work done which did a number on his gums but hopefully that will be it for awhile. The good news out of it is he won't need to have the spacers put in cause his teeth are actually growing in straight!!!! Yay finally something good out of all of this I tell ya it often feels like one bad thing after another!!! He has an appointment with the hand specialist tomorrow because he is losing the mobility in his hands and Dr. Wiss doesn't know if its an EB thing or not. I don't even really know because his sub-type is unknown some days he shows like its DDEB and others like RDEB so we will most likely be asking for some more testing to be done to try to figure it all out!! On a brighter note he made honor roll this term and we are so proud of him! He worked so hard to get it and deserves it! He has a very hard time with school and some of the kids and it is often distracting to him but he pushes through and does a good job.
Ariana: She is doing so much better with school and really has had no issues this year. She still has her moments at home and still does a lot with the sensory diet here and at school but now that she is getting older she is learning to regulate things a lot better. I am happy to say that the trauma from last year in school has not had any affect on her this year which, is great!!
Ellie: Well she is just Ellie my happy go lucky girl who just goes with the flow. Her ears have been good no infections since the tubes but has gotten whooping cough again. Shes is doing much better and we are down to one treatment a day and that is just at night before bed.
The rest of us are good just one day at a time!!! My fibro has been up and down and the RA is a killer but what can I do?? Would like to see a great doctor but after all the kids appointments and stuff I have no energy to worry about me. I know I shouldn't be like that but the pain just wipes me out and I have no energy.
I will update about Jonathon's appointment tomorrow!
