A well needed update!

Hello to those who read my blog. I am sorry for the lack of blog updates it has been so chaotic. At least I try to keep my fb updated. So.. Since may kenadie has had her blood drawn and it has came back low. :( She is not responding to her IGG infusion like she had been. Her vitamin D, alk phosphate, lymphocytes. Yeah a list of them. So we are going to increase her infusion rate, going to increase some other meds. She is such a fighter. her pediatrician god bless his soul is amazing he will email me or call me whenever i need him. He is so dedicated to her and helping us with her stuff.

One thing I made a decision on was that Kenadie will be a DNR in the pedi world they call it AND (allowing natural death to happen). If something should happen and she has no heart or is not breathing I am not going to allow her to be resuscitated. Yes some of you may not agree with my decision on this however as a parent I need to know what is best for her. To me I don't want her living on machines. We are still doing all of our treatments I just have this lined out in case something should ever happen.
Unfortunately as a special needs parent with a chronic disease these are some things you have to think about. It is not the easiest either. However it has brought me some peace that I know what I want for my daughter.
The other day I was thinking that no parent should ever have to think about their child's mortality and such. But the world is not fair so some of us have to and some have had bury their children.
Another thing her pedi and I talked about is the way we choose her treatments now. Is this for her or to her? For her is to keep her quality life a happy one. To her is being selfish and making her miserable. Also viewing life as Enjoy the day and make the most of it because you have it not because you might not. Hell anyone of us could kill over tomorrow. So you have to just enjoy the day bc you do have it. Since having these discussions it has made viewing treatments and stuff alot easier. I can cope with the impromptu appointments better.
Last week we found out that ms k has a cyst in her urethra and some tissue is covering her vaginal area. We are doing hormonal treatments and going to go to the uro dynamics doc. She cries in pain so much because her vaginal area hurts so bad when she pees. But we have been trying to get pee from this kid for a week and omg it is so hard. She knows we are trying. We have tried u bags and a hat. everything. Silly girl.
Well thats a mini update i will try and do more now.