We are considering going to Family CAFE, the whole family or parts of us. One room will not meet the needs of all of us and actually I think some of the kids will not do well. It is all up to how much help, how much respite and the other directives that go along with our family going to such a large conference. Steven and Kaitlyn's respite is in place. Tress and Jordan's is in planning because of funds... Lucas and Emma I believe will stay behind to be safe. I want to check out what is happening in the 0 to 3 world of disabilities as it has been several years and the model has changed to a medical model and in my opinion it appears a whole lot of fraud occurring.... remember my opinion...but if medical insurances are being billed to provide a service and the child is not actually getting the service the insurance is believing or intending for the child to get in the quality of the description of what is to be delivered and by the expects it is to be delivered by well...... a rat is a rat is a rat in my opinion....
I also need to get some insight on my upcoming open heart surgery journey as it scares me to death in a sense and I know mentally it has to be done and is very typical....
My heart steps in when I hand my baby over to a team of Doctors knowing she is coming back to me on a machine keeping her alive...and then they will unhook the machine to see if she can survive without the machine...Seems so far from reality for me I cry just thinking about it.. and yet I know it is very normal for children with Down syndrome and i for years have stood by many families going through it... Just very different when it is you little girl.
I question everything.... Is it the right team of Doctors, is it in the right Hospital.... Do I have the best of everything in place for her??? Am I doing everything for her I should??
It is amazing how just administering heart medication that I know is dangerous by the drill I went through from the pharmacist to get the medication in my hands... They asked me why I needed it, who it is for and what it is being given for..I was taken back and then they went on to be sure I knew I would be giving her a very small amount 0.3 and it is here on the measure stick and no more and it is a tiny amount... etc... I felt like I was walking out with some sort of responsibility beyond normal... I have had the mind set I am keeping my little girl alive for 2 months now..each day is a challenge to feed her, such out excess fluids from her nose, mouth, move her when she is struggling to breath etc...measuring to 0.3 on a dropper is doable but now the mental image of this medication even in our home is a bit uneasy... it is locked in my room with no chance anyone can get to it other than me.. no pressure right???
