6:45pm our dear CB friend Lilie Clark at age 22months earned her angel wings and is now healthy and whole with the other angels. Please click on her link to the left to follow her story and keep her family in your thoughts and prayers tonight.
Today Dan, Danny, and I went to Milwaukee to have a chat with one of his doctors in Rehab. Danny hasn't seen him in a long while so I wanted to get him up to speed with all of Danny's issues and get his opinions on them ie: trach, hip, back, ITB pump, and tone issues, yeah I know alot to go over in one visit. But he was wonderful in helping us plan for a quality of life for Danny and to help us help all the doctors work together. So I'm looking onto his shoulders for some coordination and guidance with all of this. He applauded Dan and I with such a good job we do with Danny, so that made me feel good. Then on to the issues at hand as we all know this summer hasn't been an easy one for us. The trach thing is on the back burner right now but he is refering my to some one to get more info on it and how it would effect Danny life if we should choose to go that route. With the Baclofen pump there isn't too much to dwell on with that as even though the neuro surgeon in Milwaukee put it in I have Danny's Neuro doc maintaining it so with all the political crap one doesn't want to step on the others toes. I did voice my opinion on how it was to help Danny's quality of life and for the most part it has but with added issues as the catheter continues to slide down his spine (wasn't anchored properly) so the benefit that Danny was suppose to get from the medicine isn't what/where it's suppose to be and the puck floats (also not properly anchored) so it gets caught up in his ribs or sits on his hip causing pain. We discussed Danny's hip and with further talking about it I think it is important that we get it fixed as soon as possible. Unfortunately it took into the start of the school year for me to figure it out, but with all of the summer's medical surprises I guess I'm glad I didn't do it. So I will be calling soon to get that surgery rescheduled. Right now we are to sit and wait till his back starts to curve more (as it's been stable for 6months now) and it will. Then look into having the VEPTR procedure done. WOW that's alot to take in on one visit, but came out informed and READY to take on what comes our way. It's nice to know that now when I'm down in Milwaukee I have someone to lean on the is watching our backs and has the WHOLE picture in mind with Danny so he can be the "coach" if you will to all the other team members.
Today I started getting calls from the school therapist so I'm so excited to get them over and Danny back in the routine. WELCOME BACK!!!
Don't forget Friday is the last day to support The Osero's in the Make A Wish walk/Run so please pledge us. You can help make a difference in a child's life. Give them the opportunity to make their wish come true. Thanks for helping out in such a wonderful cause. Click on the link to the left and that will get you to our team page and you donate online.
The Disability Blogger Weekend Link-up: post it
19 hours ago